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Organ Transplantation/Brain Death 2009

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Circumstances in Japan

・Jul 13, 2009 Vote at the Plenary Session of House of Councilors
 After amended bill A was rejected (Total: 207, For: 72, Against: 135), bill A was passed.
 (Total: 220, For: 138, Against: 82)

・Jul 10, 2009 Interim Report and Deliverations at the Plenary Session of the House of Councilors

・Jul 9, 2009 Committee on Health, Welfare and Labor of House of Councilors had deliverations

・Jul 7, 2009 Committee on Health, Welfare and Labor of House of Councilors had deliverations

・Jul 6, 2009 Committee on Health, Welfare and Labor of House of Councilors had deliverations

・Jul 2, 2009 Committee on Health, Welfare and Labor of House of Councilors had deliverations

・Jun 30, 2009 Committee on Health, Welfare and Labor of House of Councilors began deliverations

・Jun 26, 2009 The aims of the two bills were explained at the plenary session of the House of Councilors

・Jun 18, 2009 Vote at the Plenary Session of House of Representatives
 Bill A was passed. (For: 263, Against: 167, Absence or Abstention: 47)

・Jun 16, 2009 The plenary session of the House of Representatives had deliverations

・Jun 9, 2009 Interim Report of Committee on Health, Welfare and Labor at the plenary session of the House of Representatives

・Jun 5, 2009 Committee on Health, Welfare and Labor of House of Representatives had second deliverations

・May 27, 2009 Committee on Health, Welfare and Labor of House of Representatives began deliverations.

・Apr 21, 2009 Subcommittee on Examination of Revision of Organ Transplantation Law, Committee on Health, Welfare and Labor, House of Representatives heard opinions from six eminent persons.


Media Reports etc. (in Japanese)

Organ Transplantation/Brain Death Media Reports etc. in Late June 2009
Organ Transplantation/Brain Death Media Reports etc. in Early June 2009
Organ Transplantation/Brain Death Media Reports etc. in May 2009
Organ Transplantation/Brain Death Media Reports etc. in April 2009

Opinions, Statements, Demands and Study Groups of Various Groups and Fields

◆Aug 28, 2009 Japan National Group of Mentally Disabled People "[Remonstrance] On Revision of the Organ Transplantation Law"

◆Jul 31, 2009 TANAKA Tomohiko "On Passage of Revision of the Organ Transplantation Law" (WAN Viewpoints)

◆Jul 27, 2009 MORIOKA Masahiro "Brain Death of Children" (NHK Viewpoints "Problems of Organ Transplantation Law (3)")

◆Jul 13, 2009 The National Alliance of Disabled People against "Compensation System of Maternity Medical Care" based on Eugenic Thoughts
[Opposition Statement] Against Establishment of the Proposal A of Revision of the Organ Transplantation Law at House of Councilors

◆Jul 13, 2009 Bioethics Conference "Emergency Statement on Establishment of Bill A of Revision of the Organ Transplantation Law at House of Councilors"

◆Jul 13, 2009 DOI Kenji "It is dangerous to cover up everything with 'love'" (The Kobe Shimbun "The vote of bills of revision of the Organ Transplantation Law is conducted today")

◇Jul 13, 2009 The plenary session of the House of Councilors voted for the revision

◆Jul 12, 2009 Citizens' Seminar Series on "Brain Death" and Organ Transplantation
 "We are alive! Message from parents and children with artificial ventilators"

◆Jul 10, 2009 Japan National Group of Mentally Disabled People "[Petition] Demand for Cautious Discussion on the Revision of the Organ Transplantation Law"

◆Jul 8, 2009 KOMATSU Yoshihiko "What is the real meaning of Proposal A to the Organ Transplantation Law?: "Brain Death = Human Death" to "Death with Dignity"
Sekai August 2009 (Iwanami Shoten) p. 47-53

◆Jul 8, 2009 In the Diet Seminar: The 15th Emergency Meeting to Consider Corruption of "the Organ Transplantation Law"
 Emergency Statement from Religious Field "Brain death is NOT human death"

◆Jul 7, 2009 MORIOKA Masahiro From the Hearing at the 171th Committee on Health, Welfare and Labor of the House of Councilors

◆Jul 5, 2009 NUKATA Isao "Revision of the Organ Transplantation Law should have consistency with overall medical treatment" (Asahi Shimbun)

◆Jul 3, 2009 Japan National Group of Mentally Disabled People "Petition on the Revision of the Organ Transplantation Law"

◆Jul 3, 2009 SHIMAZONO Susumu "Don't destroy the foundation of Bioethics" (Asahi Shimbun)

◆Jul 3, 2009 NAMIHIRA Emiko "We need to discuss with understanding the complicated facts" (Asahi Shimbun)

◆Jul 1, 2009 Japanese Association of Religious Organizations Opinion Statement on Discussion of Revision of the Organ Transplantation Law at the House of Councilors

◆Jun 30, 2009 DPI-Japan Meeting
 Emergency Statement Demanding Careful Discussion in the House of Councilors, and Opposing the Revision of the Organ Transplantation Law

◆Jun 30, 2009 TAKAKUSAGI Koichi The Paradox of "Brain Death" (People's Plan Institute)

◆Jun 29, 2009 National Alliance of Disabled People Liberation Movement Statement against the Corruption of Brain Death and the Organ Transplantation Law

◆Jun 27, 2009 MORIOKA Masahiro Dismal Situation of Organ Transplantation in Advanced America: The Proposal A of the Organ Transplantation Law is Passed (Asahi Shimbun)

◆Jun 26, 2009 WASHIDA Kiyokazu "The Revision of the Organ Transplantation Law" (Allatanys News Guide)

◇Jun 26, 2009 The plenary session of the 171th Regular Diet Session of the House of Councilors began discussion

◆Jun 25, 2009 The National Alliance of Disabled People against "Maternity Medical Supplement System" Based on Eugenic Thoughts
 "Statement against "Revision" of the Organ Transplantation Law"

◆Jun 25, 2009 OGINO Miho On the Revision of the Organ Transplantation Law Passed at the House of Representatives (WAN Opinions)

◆Jun 24, 2009 In the Diet Seminar: The 14th Emergency Meeting to Consider Corruption of "the Organ Transplantation Law"
 It was a lie that "WHO's new guidelines does NOT limit organ transplantation overseas." Careful discussion is neccesary at the House of Councilors

◆Jun 21, 2009 The group to Establish Regional Independent Living of People with Incurable Diseases
 Emergency Statement against Adopting of the Proposal A of the Organ Transplantation Law (, which increases the brain death determination to people who have not declared, or cannot declare, their consents)

◆Jun 21, 2009 Citizens' Seminar Series on Questioning "Brain Death" and Organ Transplantation

◆Jun 18, 2009 Bioethics Conference Emergency Statement on Adopting Proposal A at the House of Representatives

◇Jun 18, 2009 The Plenary Session of the House of Representatives voted for the Bill A (For 263, Against 167, Absent or Abstention 47)

◆Jun 18, 2009 KURAMOCHI Takeshi "Deep deliberation is necessary before decision" (Kochi Shimbun)

◆Jun 17, 2009 TANAKA Tomohiko "Cruelty of Deciding which Life to Live and which Life not to Live" (Kochi Shimbun)

◆Jun 16, 2009 KOMATSU Yoshihiko "Perfunctory Diet Discussion" (Kochi Shimbun)

◆Jun 14, 2009 AMADA Josuke "We Need Enough Discussion on Medical Care" (The Kyoto Shimbun)

◆Jun 11, 2009 Bioethics Conference "Demanding the Thorough Discussion on the Revision of the Organ Transplantation Law"

◆Jun 4, 2009 Ibaragi Aoi-Shiba-no-Kai "Let's oppose the revision of the Organ Transplantation Law which threatens the right to live of people with disabilities!"

◆Jun 3, 2009 Japan National Group of Mentally Disabled People [Statement] We oppose the "revision" of the Organ Transplantation Law which discriminates lives

◆Jun 3, 2009 NPO Independent Living Center Kurepasu Emergency Statement Opposing the "Revision" of the Oragan Transplantation Law

◆May 29, 2009 NPO ALS/MND Support Center Sakura-kai "Emergency Statement Opposing the "Revision" of the Oragan Transplantation Law"

◆May 28, 2009 DPI-Japan Meeting"Emergency Statement Opposing the "Revision" of the Oragan Transplantation Law"

◆May 28, 2009 The Group to Establish Independent Living of People with Incurable Diseases in Their Community
 Please do not threaten the right to live of people who cannot declare their will, by brain-death standard or determination, or the decision of the third party

◇May 27, 2009 The 171th Regular Diet Session of the House of Representatives Committee on Health, Welfare and Labor began discussion

◆May 17, 2009 "Bakubaku no kai"--The Parents' Group of Children with Artificial Ventilators
 "Urgent Appeal on the Revision of the Organ Transplantation Law (Announcement and Request)"
 http://www.bakubaku.org/wataiki-apeal-media-oshirase.html (Japanese)

◆May 17, 2009 "Bakubaku no kai"--The Parents' Group of Children with Artificial Ventilators
 "Please have cautious and enough discussion on the revision of the Organ Transplantion Law"

◆May 12, 2009 Bioethics Conference "Emergency Statement on the Revision of the Organ Transplantion Law in Japan"
 Bioethics Conference http://seimeirinrikaigi.blogspot.com/ (Japanese)
 Press Conference http://seimeirinrikaigi.blogspot.com/2009/05/blog-post_9443.html (Japanese)

 
 
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■May 12, 2009
May 12, 2009
Emergency Statement on the Revision of the Organ Transplantion Law in Japan
Bioethics Conference

Chairperson: KOMATSU Yoshihiko (小松 美彦 ), Professor, Tokyo University of Marine Science and Technology

Bioethics Conference consists of a group of academics who are involved in education and study of bioethics. We understand that state-of-the-art medical technology and biotechnology is not only the issue of medical field or science, but also the one which can influence the future of our culture, civilization and society. With such awareness, we have carried out our education and studies. Now, the media reports that the revision of the Organ Transplantation Law has been discussed in the Diet as the most important issue, and most probably, the revision bill will be passed in the Diet without being carefully discussed in the Committee on Health, Welfare and Labor. As the bioethics scholars who have social responsibility on the revision of the Oragan Transplantation Law in Japan, we would like to come out of the ivory tower and announce the following statement to the public.

1) Brain Death / Organ Transplantation is not satisfactory medical treatment because it depends on organs provided from another patient who is considered as the brain dead. Variety of problems appear because medical care does not wrap it up with the patient but premises another patients "death" as brain death.

2) As part of it, many people have discussed the lack of available organs for a long time. However, "shortage of organs" means "shortage of people with brain dead". What kind of society is it which has plenty of people with brain dead to provide enough organs for organ transplantation? For example, about 260,000 patients now undergo artificial dialysis in Japan. If we try to save all of them by organ transplantation, we need at least 130,000 people with brain dead by traffic accidents or similar causes.

3) The Revision of Plan A is said to be the best amendment to solve the shortage of organs. The plan is basically the same with the U.S. law on the way of dealing with brain death and the terms of donating organs. The U.S. law has been effective for 22 years but it has not solved the shortage of organs. Because of it, the U.S., contrary to what Japan has condcuted, has increased live organ transplantation to increase available organs. Therefore, we suspect the shortage of organs will not be solved even if we adopt Plan A or any other regulations.

4) Neither Plan A nor D even requires the patient's own consent to donate their organs. This violates the fundamental principle of the current law. This is more of "establishing a new law" rather than "revising the current one". However, both plans focus on relaxing restriction on donating organs, even without reviewing the discussion conducted toward the current law. Therefore, we believe both plans lack carefulness to handle the life or death problem of the people.

5) The achievement of organ transplantation is not clear because it is described only by acceptance and survival rate, and the most important matter, the life extension rate, is not statistically analyzed. According to some research papers in the U.S., more patients can live for another year unless they have heart transplantion. Therefore, we believe comparative research on survival rate between with organ transplantation and without it should be made. Moreover, scientific inspection should be conducted after finding out the patients' conditions after the organ transplantation including both good and bad ones.

6) Recently, excision of ex vivo tumor has been conducted in the U.S. instead of multi-organ transplantation. In Japan, treatments using pacemakers have just began in order to save the lives of infants with dilative cardiomyopathy. These are the alternative ways to save the lives of patients without transplanting organs, so the governments should arrange these ways so that more patients and citizens can receive such benefits. Also, they should work harder to prevent traffic accidents and re-establish better emergency medical services, in order to reduce the number of people with brain dead.

7) Most importantly, the fact that "brain death equals human death" has not been scientifically proved. How can we call them "dead bodies" when people with brain dead can still stay warm and keep pulsing, move smoothly (Lazarus phenomenon), and can give birth to babies. Also, why do doctors have to give anesthesia and muscle relaxants to "dead bodies"? The scientific logic based on organic synthesis idea, which had been the only admitted theory by the world public, has already been broken because of the existence of a person with long-term brain dead, up to 21 years. Even if we find a way to determine brain death of children without any difficulties, we can only determine "brain dead situation", but not regulate "death" by that.

8) The human rights of "donor equals people with brain dead" have been violated even if the current Organ Transplantation Law is in effect. For example, quite many violations of the Law and guidelines are suspected in 81 cases as of brain dead determination and organ transplantation under the current law. The government and the Diet should carefully examine the cases first. Unless they examine the cases carefully, there is no chance that human rights of "donors equals people with brain dead" will be protected in the future. Now the problem will be expanded to children's cases, too. We doubt the efficiency of "the third organization" to protect "donor equals people with brain dead", even if such institutions are established according to Plan D.

9) If Plan A, which defines "brain death equals death", is adopted, existing patients with long-term brain dead can be most certainly killed. However, the situation of such patients and their families has been little known - how the long-term brain dead people and their families have lived as much as they can - and the lawmakers have been only discussing how to increase the number of available organs. If we say that organ transplantation is seen as cooperation of humans, then we should consider the cooperation with people with (long-term) brain dead as well.

10) The government and the Diet, and supporters of Plan A, B, C and D should at least discuss the above-mentioned points carefully. They are responsible for explaining the details to the citizens. To begin with, the life and death issue of human beings should not be decided by majority voting or switched to legal issues.

Joint Signatures of "Emergency Statement of Bioethics Conference" (68 + 3 signatures)
(The list with the names is left out here.)


 
 
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■May 17, 2009
"Please have cautious and enough discussion on the revision of the Organ Transplantion Law"
"Bakubaku no kai"--The Parents' Group of Children with Artificial Ventilators

Chairperson: OTSUKA Koji (大塚 孝司)
- Urgent Appeal Page 1 "We are alive!"
 http://www.bakubaku.org/watashiatchi-ha-ikiteimasu.pdf (Japanese)
- Urgent Appeal Page 2-3 (Full Statement)↓
 "Please have cautious and enough discussion on the revision of the Organ Transplantion Law"
- To the News Media↓
 http://www.bakubaku.org/zouki-ishokuhou-kaitei-kinkyu-apeal.html#wata-iki-apeal-hombun (Japanese)

May 17, 2009

Dear Diet Lawmakers,

Please have cautious and enough discussion on revising the Organ Transplantion Law

Most children of "Bakubaku no kai", the Parents' Group of Children with Artificial Ventilators, live for a long time with artificial ventilators because of illness, accidents or other various reasons. Many of them live their lives everyday as much as they can, grow up as much as they can, while they surprise specialists and doctors who gave them diagnoses of "brain-dead" or "almost brain-dead". Although they wear artificial ventilators, or they have severe disabilities, they live everyday with absolute existence in each family, school and community, as an invincible "human being, human child" as other children.

After the incident of taking off a person's artificial ventilator in Imizu City Hospital in 2006, many guidelines and ethics committees for terminal care were made in many places. At the same time, people began to announce or discuss openly issues of stopping or reducing treatment of so-called "selective treatment" for children with severe disabilities or progressive incurable diseases. We are afraid that the right of the children with severe disabilities etc. is threatened. We believe it is important to make the society where everybody can live safely and happily even with diseases or disabilities, instead of cutting down the people's lives.

This time, the media report that the pressure on revising the Oragan Transplantation Law is amounting. They say that the main aim of revising the law is to enable us to have infant organ transplantation domestically in Japan. In order to do so, it is said that the law would be revised to make "brain death" as "general death", and just having the family's agreement can provide their children's organs for other people. We are afraid this will make the right to live of children with severe disabilities much more threatened.

We can not tell children "You are dead" when the children who are diagnosed as "brain-dead" or "almost brain-dead" are trying their best to survive as they grow up day by day. We can feel they are actually and surely alive there, and we can feel children are willing to live, although they need help with some equipments. Regarding the method of "brain death determination", we should not determine if a patient is brain-dead or not in order to take out his/her organ, because such method often can shorten the lives of children in serious condition. Some people say we can refuse "brain death determination". However, there can be a silent social pressure on us saying we are "extending life uselessly" or "rejecting available organs" when the law defines "brain death" as "general death".

We would like to doubt that agreement of family (parents) of a child is enough to provide organs unless the child refuses to do so. We always tell the public that each child is precious no matter how severe disabilities they have or even if they are wearing artificial ventilators. However, we have learned this idea by actually living with such children. They have turned over our value judgment. Our society still has lots of preconception and prejudice and discrimination to illness or disabilities. Without opportunities for parents to learn from their children, how can they make the best decision for the sake of children under the pressing situation with limited information? We parents cannot be the best representative for our children, not only in the case of children with abuse but in any case. (not to mention the specialists.) Children's lives are not parents' ones, but children's ones.

We understand many parents seek more organ transplantation in Japan. We really understand their hope that their children can be healthy and live even a day longer, and live a rich childlike life. We also hope the same to our children with severe disabilities. Both children's lives are important ones.

Therefore, we request the lawmakers consider lives and human rights of the children who will be decided as donors as well as the children waiting for more organs in Japan. Please discuss this issue with great caution.

We would like to have the society where every life is respected, and each one can live his or her given life as much as possible.


 
 
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■May 17, 2009
May 17, 2009
"Urgent Appeal on the Revision of the Organ Transplantation Law (Announcement and Request)"
"Bakubaku no kai"--The Parents' Group of Children with Artificial Ventilators

Chairperson: OTSUKA Koji
 http://www.bakubaku.org/wataiki-apeal-media-oshirase.html (Japanese)

Dear Media Reporters,

We would like to inform you that "Bakubaku no kai", the parents' group of children with artificial ventilators, has just sent our statement of "Please have cautious and enough discussion on revising the Organ Transplantion Law" to the National Diet members as the discussion on the revision of the Oragan Transplantation Law has been getting active.

We would like you, the media, to report this issue, not only from the angle of people who wait for organ transplantaion, but also from the angle of people whose lives can be denied by deciding all the brain death as "human death". It is important to remember the meaning of saving precious lives and bring them up. We hope you, the media, will report this issue objectively so that all the readers can not only consider this issue as their own problem, but the whole society can discuss this issue.

We would like to have the society that every life is respected, and everyone can live his or her given life as much as possible.


 
 
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■May 28, 2009
May 28, 2009
Please do not threaten the right to life of people who cannot declare their will, by brain-death standard or determination, or the decision of the third party
The Group to Establish Independent Living of People with Incurable Diseases in Their Community (Japanese)

Chairperson: YAMAMOTO Tsukuru (山本創)

Our group help patients live independently in their community no matter how incurable their diseases or how severe their disabilities are. The patients themselves and the related people gather to work with us. Some of the patients with incurable diseases have breathing difficulties, or muscle or nerve difficulties. These diseases get worsen very quickly. Some of them live in their community with artificial ventilators, others communicate with people with slight movement of their eyes or their movable part of the body etc. Some patients become so-called totally locked-in state as the disease progresses, and cannot communicate as a result. However, they are alive. Although other people cannot read the patients' wills, they are human beings with their own conscious minds, not dead bodies.

Please do not threaten the right to live of our friends in such state (including those who became in the state suddenly without declaring their wills beforehand) by letting the third party determine their destiny or determining whether they are dead bodies or not via brain-death standard. The decision-making of the patients (including children) and their family is often different due to hardships of caring or living. As a result, many end up committing forced double suicide. It is urgently required in Japan, too, to protect patients from their own standpoints based on the principles of the Convention on the Rights of Persons with Disabilities. There must not be even a few percents of possibilities that doctors take the lives of patients who are alive, and moreover, are wishing to live at that moment, in hospitals which are supposed to save the patients' lives.

Therefore, we demand the following:

1. We need siscussion and solutions based on the way persons of the both sides live.
First, please discuss the way persons of the both sides live without any preconditions of others' death. Some examples of this are: securing enough national budget to develop medical equipments or regenerative medicines etc. and developing treatment research and measures against it actively. It is necessary to resolve the conflict structure between the both sides which are in severe conditions. Please discuss the issue very cautiously so that the National Diet cannot seek an easy solution by turning over the order of discussion.

2. Please do not threaten the right to live of the people who cannot declare (have not declared) their wills.
Please do not threaten the right to live of the people who cannot declare their wills (including those who have not declared their wills in advance) by using the brain-death standard or determination, or the third party's decision.

3. Please do not let the parents or family of the patients decide "life or death" of patients (including children) who cannot communicate.
Even the parents or family of the patients cannot decide "life or death" instead of the patients. Some choices made by the parents or family tend to be different from those made byt the patients due to the hardship in care and living. The choices depend on the environmental arrangement of the society of the time.

4. The Lives of the patients who would like to live should not be taken.
Patients' wills may vary, depending on the situation. Some patients' wills could change at the last moment even if they declared their intentions to contribute their organs beforehand. In case the patients lost the way of communication, their wills to live should be confirmed carefully until the last moment. Please discuss this issue very cautiously taking into account of inspecting possible disasters.


 
 
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■May 28, 2009
May 28, 2009
Emergency Statement Opposing the "Revision" of the Oragan Transplantation Law
Non Profit Organization Japan National Assembly of Disabled Peoples' International (DPI-Japan)

Chairperson: MISAWA Ryo (三澤 了)
 http://dpi.cocolog-nifty.com/vooo/2009/05/528-2f90.html (Japanese)

Disabled Peoples' International (DPI) is organized by people with disabilities themselves with the policy of "A Voice of Our Own". DPI is an international non-government organization recognized by the United Nation. Japan National Assembly of Disabled Peoples' International was established in 1986, and has promoted human rights of people with disabilities and supported their independent lives in their own community since then. Internationally we have worked for the establishment of the Convention on the Rights of Persons with Disabilities in the United Nations. Domestically we have worked for the Services and Supports for Persons with Disabilities Act and the barrier-free law and so on.

Japan National Assembly of DPI consists of many disabled people's organizations. Their disabilities vary from physical, intellectual, mental ones, or incurable diseases. We have been especially working hard so that people can live in community no matter how severe their disabilities are such as cerebral palsy or ALS which makes their whole bodies immobile. We also oppose the eugenic thought that "people with disabilities equal undesired existence", and we have been working to abolish the "Eugenics Protction Law" etc.

It is obvious that the precondition of making the society that all people with disabilities can live in community is that every life should be valued equally.

The committee of Health, Welfare and Labor at the House of Representatives began discussing the "Revision" of the Oragan Transplantation Law yesterday (May 27). Japan National Assembly of DPI make the following urgent statement to oppose this movement.

1. There have been many questioned cases happening in the world concerning "brain death". Some brain-dead people lived for decades, or others returned to consciousness after a while and could hear people's voices. We cannot be convinced at all that it is OK to take out organs from persons who have warm body with beating heart by deciding them "dead".

The idea of devaluing the lives of people with disabilities, such as "patients might recover, but will have disabilities", is suspected to be in people's mind when they define "brain death" as "human death". Choosing which lives are worthy and which ones are denied is eugenic thoughts. We cannot agree with this from the standpoint of protecting human rights of people with disabilities.

2. This urge of the revision of the Organ Transplantaion Law is made to reduce the age limit of donors or extend the definition of "brain death". Behind this is WHO's movement which aims to limit organ transplantation overseas. We oppose this revision.

People with disabilities have been prejudiced as the ones who "do not have their own opinions" and their subjective will have been ignored for a long time. Some of them lack the "normal" way of communication to convey their wills to others because of their severe disabilities. We have great fear about this situation in today's society.

Especially these days, the budget for welfare and medical treatment has been suppressed in Japan. In such social situation, we are afraid that our lives might be devalued, and other people might suddenly decide to stop our treatment and make us "donors" so that they could take out organs from our bodies. We are afraid this revision might lead to such future.

3. What we need now is to secure the proper medical treatment so that people with disabilities - no matter how severe their disabilities or diseases are - can survive, not the precondition of "other people's death". Also, behind the rooted discrimination of believing "disabilities equal unhappiness" is the lack of the social support for them. Therefore, it is necessary to provide the satisfactory welfare services which enable all people with disabilities to live independently in the community as human beings.

4. The United Nations adopted the Convention on the Rights of Persons with Disabilities in December 2006, and it became effective in May 2008. Japan is urged to arrange domestic legal systems to ratify the Convention. The basic principle of the Convention is "Nothing About Us, Without Us!"

Therefore, we strongly require the government to discuss the revision of the law taking enough consideration from the standpoint of protecting the equality of human lives of people with disabilities.

[Contact]
Japan National Assembly of Disabled Peoples' International (DPI-Japan)
5th floor Musashino Building, 3-11-8, Kanda-nishikicho, Chiyoda, Tokyo, 101-0054, JAPAN
TEL: +81-3-5282-3730, FAX: +81-3-5282-0017
E-mail office@dpi-japan.org
http://www.dpi-japan.org/english/


 
 
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■May 29, 2009
May 29, 2009
Emergency Statement Opposing the "Revision" of the Oragan Transplantation Law
Non Profit Organication ALS/MND Support Center Sakura-kai (Japanese)

Chairperson: HASHIMOTO Misao

"ALS/MND Support Center Sakura-kai", a non profit organication, is a group supporting people (including children) with whole-body disabilities with severe neuromuscular disorders.

We oppose the "Revision" of the Oragan Transplantation Law. Why "revise" now? Simply because Japan wants to solve the demand and supply problems?

Of course, it is the adult's responsibility to make the society where children in need of organ transplantation can survive. However, will they really appreciate their lives that are saved by making other children dead by deciding them as "brain dead"? It can deprive children with disabilities of their right to live if the law states that all "brain death" is "human death".

Please do not let parents, their family or the government to decide if those who cannot declare (have not declared) their wills, those who have difficulties in declaring so and children should live or die.

What is needed now is to secure the appropriate medical treatment that can help patients survive no matter how severe disabilities or incurable diseases they have, instead of relying on "somebody else's death". We oppose to adopt the bill which can threaten people and children with disabilities or incurable diseases in such a haste.

[Contact]
Non Profit Organication ALS/MND Support Center Sakura-kai
Emial: aji-sun@nifty.com(@→@)
TEL/FAX: +81-3-3380-2310
http://www.sakura-kai.net/ (Japanese)

 
 
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■June 3, 2009
June 3, 2009
Emergency Statement Opposing the "Revision" of the Oragan Transplantation Law
Non Profit Organization Independent Living Center Kurepasu

Chairperson: UENO Misaho

"Independent Living Center Kurepasu", a non profit organization, is an independent living center mainly run by people with disabilities themselves in Saitama City. We aim to realize the independent living in local community that people with severe disabilities are respected as "human beings" and can live heartful lives.

As the committee on Health, Welfare and Labor in the House of Representatives began discussing the "revision" bills of the Oragan Transplantation Law on May 27, we strongly oppose the its "revision" at this stage.

 Why is its revision necessary now?

 It is a big mistake if its revision is made simply to solve the problem of demand and supply.

 We are human beings, not parts to provide organs.

 However, we were wondering how many people would understand and take it serious that saving patients by "brain death" would create new "human death".

 We are afraid the lives of people with disabilities will be valued less if this revision bill is passed.

 We are scared that it will lead to sorting of lives.

 Defining all "brain deaths" as "human deaths" by law can deprive the right to live of people with disabilities like us.

 This society is still a hard place for people with disabilities to live in. Many people with disabilities have difficulty expressing their wills. Still, they are alive, and are growing up. Even the parents, family or the nation should not decide the life or death issue of people or children who cannot declare (have not declared) their wills or who have difficulty expressing their wills easily. We are strong enough to live in society as "human beings" although we have some disabilities. Please do not deprive us of the right to live.

It is necessary for the society to make the society which can help patients waiting for organ transplantation.

 However, what is needed now is to secure the appropriate medical treatment so that people with disabilities can live happily no matter how severe disabilities or incurable diseases they have, not relying on "somebody else's death" . Isn't it right?

 We oppose passing the bill in such a haste which threatens the lives of people and children with severe disabilities and incurable diseases.

[Contact]
Non Profit Organization Independent Living Center Kurepasu
http://www.kurepasu.org/ (Japanese)


 
 
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■June 3, 2009
June 3, 2009
[Statement] We oppose the "revision" of the Organ Transplantation Law which discriminates lives
Japan National Group of Mentally Disabled People


The Japan National Group of Mentally Disabled People is the national organization of mentally disabled people and groups, which has been active for 35 years. Four proposals to revise the Organ Transplantation Law were presented in the Diet, and the committee on Health, Welfare and Labor in the House of Representatives conducted the blanket discussion on the revision on May 27. We understand that this is the start of the discussion of the revision of the Organ Transplantation Law.

The Organ Transplantation Law discriminates human lives. It decides some patients have the right to live, other patients can be left to die, and allow organs to be taken out from a person's warm and beating body based on the doctor's diagnosis of "death". So-called Proposal A allows organs to be taken out in the almost forced way. Even Proposal D can allow organs to be taken out in the almost forced way with the consent of family who probably has little time to consider the matter.

This issue is mainly discussed from the standpoint of organ recipients. It can open a new job field for doctors, too. However, this depreives mentally disabled people like us who would be the providers of organs of the possibility to live.

Article 1-2 and Article 6-1 of the International Covenant on Civil and Political Rights stipulates that every human being has the inherent right of life and existence, and its Article 7 prohibits medical or scientific experiments without patients' free consent. Article 10 of the Convention on the Rights of Persons with Disabilities stipulates the inherent right of life, and prohibits taking lives of people with disabilities as unnecessary ones for other patients based on eugenic thoughts. Today, each ministry in Japan has been adjusting domestic laws to ratify the Convention on the Rights of Persons with Disabilities. This revision of the Organ Transplantation Law will set back established human rights laws, and will slow down the ratification of the Convention. From now on, the legal system, represent the opinions of those who would be killed based on the Article 4-3 of the Convention, is required.

We choose to live, and demand the right to live independently with medical treatment and support (including supported consent decision) even when our consciousness is beyond the reach. We strongly oppose the proposals on the revision of the Organ Transplantation Law which trespass these rights.

Japan National Group of Mentally Disabled People (全国「精神病」者集団) (Japanese)
c/o Kizunasha 2-39-3 Chuo, Nakano-ku
Tokyo 164-0011 Japan
http://www.jngmdp.org/e/

 
 
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■June 4, 2009
June 4, 2009
"Let's oppose the revision of the Organ Transplantation Law which threatens the right to live of people with disabilities!"
Ibaragi Aoi-Shiba-no-Kai


Ibaragi Aoi-Shiba-no-Kai is a group of and for people with disabilities of cerebral palsy.

We fear our lives are threatened by the proposals on the revision of the Organ Transplantation Law in the Diet.

We have cerebral palsy because something is wrong with our brains. Because modern society value brain power, people with intellectual disablities or mental ones, have faced lots of misunderstandings and prejudices.

In may cases, when despaired parents kill their children with disabilities, the general public tend to focus only on the parents and pay little attention to the children who were killed. Or there are many such cases as a murder of the child with intellectual disabilities in Mito. What does it mean? It is the proof that life of people with disabilities are less valued.

In this situation, although doctors and politicians who promote organ transplantation explain "brain death is not brain disability", people keep such image.

Indeed, there was a case in Tsukuba University Hospital before the Organ Transplantation Law was enforced that a person with mental disablities was made to be a donor and his pancreas and kidneys were taken out at the same time. The doctor who conducted this was not prosecuted although there was no Organ Transplantation Law to allow such action at the time. Later he became the Chancellor of Ibaraki Prefectural University of Health Sciences.

These proposals for the revision of the Organ Transplantation Law, except for Proposal C, define brain death as legal one and increase the number of donors.

Especially, Proposal A allows organs to be taken out of all people with brain dead. This is against the Article 25 of the Constitution which stipulates the right to live.

The treatment of organ transplantation is based on the concept that lives are divided into valued ones and unvalued ones, and the unvalued ones are killed. It leads to legislation of death with dignity or euthanasia that people with unvalued lives are considered as unhappy and unhappy ones lead to death.

Can't this lead to the thought in which people with disabilities and Jewish people were sent into the gas chambers during the World War II by Nazi Germany?

We strongly oppose the proposal on the revision of the Organ Transplantation Law which defines brain death as legal one to increase the number of donors.

Ibaragi Aoi-Shiba-no-Kai
TEL +81-29-831-3169

 
 
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■June 9, 2009 The Interim Report Presented At the Plenary Session of the Committee on Health, Welfare and Labor in House of Representatives

Remark of NAKAYAMA Taro (Proposer the Proposal A) which Relates to the Interim Report
"For those who seek death with dignity, determination of brain death is the meseaure to embody that will. Therefore, by defining brain death as human one, I believe we can establish the system to respect the Living Will for those who recognize brain death as human one and those who do not."

 
 
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■June 11, 2009
June 11, 2009
Demanding the Thorough Discussion on the Revision of the Organ Transplantation Law
Bioethics Conference

Chairperson: KOMATSU Yoshihiko (小松 美彦), Professor, Tokyo University of Marine Science and Technology
http://seimeirinrikaigi.blogspot.com/2009/06/blog-post.html (Japanese)

Bioethics Conference is a group of academics involved in education and research of bioethics. We announced "The Emergency Statement on the Revision of the Organ Transplantation Law" under the joint signatures of 71 people (68 plus 3), and held a press conference at the press club of the Ministry of Health, Labour and Welfare in May 12 (Please see http://seimeirinrikaigi.blogspot.com/ (Japanese) for details).

At that time, we, as the specialists who are involved in bioethics, pointed out various problems to be discussed before revising the law. However, the plenary session is going to decide the revision based on the life and death view of each lawmaker after briefly discussing on the issue - the discussion is much shorter than the one which adopts the current law. However, this issue influences not only every citizen's life and death, but also the future of Japanese culture and society greatly. We are deeply concerned that this decision, if remained, will be the cause of great trouble in the future of Japan. Therefore, we state the following opinions again, and we strongly demand the through discussion again.

1. We should confirm what is actually written in the WHO's new guidelines, and discuss based on the facts
Contrary to what people say or hear, WHO's new guidelines do not demand "limitation of organ transplantion overseas" or "self-sufficiency of organs for transplantation". Proposal A and D can even be against the WHO's new guidelines which request "protection of underaged people" and "protection of legally powerless people". Also, even if "the Third Organization" is established as Proposal D recommend, we believe such organization will not function effectively. In addition to that, Proposal A and D says organs can be taken out without the "consent of the person" him or herself. This ignores the basic principle of the present Law. Thus, it is more like adopting "new law" than revising the present Law.

2. The existence of medical treatments to save patients without organ transplantation should be recognized by patients and the citizens, and the Governments should support them
The treatment using pacemaker began saving infants with dilative cardiomyopathy instead of transplanting organs. There are more possibilities to save patients without transplanting organs, so the Governments should arrange more patients and citizens can receive such benefit first. Then, the aim of revising the Law to "solve the organ shortage" need to be reconsidered.

3. Reconsider it would not jeopardize the Nation to try to increase organ donors
"The shortage of organs" means "the shortage of brain dead people". However, if there is less traffic accident, and more proper emergency services, there will be less "brain dead people" as well. It should be the basic responsibility of the governments and the Diet to realize the society that citizens can live safely and happily. The effort of building such happy society cannot increase "brain dead people = donor" at the same time.

4. Remember the fact that "brain death = human death" is not scientifically proved
In recent years, even Americans are forced to admit that "brain death is NOT human death". In this point, it is not emotional or anti-scientific that quite many people feel uncomfortable to make brain dead people "dead body", when they can still stay warm and keep pulsing, move smoothly (Lazarus phenomenon), and keep growing up.

5. As long as there is a possibility that human rights of "donor = brain dead people" can be violated, we should not decide by majority voting
The present Organ Transplantation Law states that "to consider the operational situation of the Law, and to examine its overall situation" is the major premise of revising the Law (Supplementary Provision Article 2). However, there have been some questionable cases of legal or guidelines violation among 81 cases of brain dead determination and taking out of organs. If the lawmakers revised the Law without thoroughly examining and studying these point, there will be little hope that human rights of "brain dead = donor" will be protected in future either. In case of Proposal A and D, there is higher possibility that human rights of younger children will be jeopardized, too.

To begin with, the life or death issue of human beings should not be decided by majority voting or replaced with legal issues. In addition to that, this revision fiasco only mistakingly focus on how to increase the number of donors, based on the misinformation of WHO's new guidelines, lack of scientific data on life-extending effect by organ transplantation, or without understanding the real situation of long-term brain dead patients and their families. If the revision goes ahead as it is, we are afraid serious problems will occur bioethically, legally and politically, and socially as we stated above.

We demand again. The lawmakers should seriously reconsider their position as a lawmaker, recognize their responsibility to all the Nations, Japanese culture and its future, and have thorough and complete discussions on this issue.

Joint Signatures of "Emergency Statement of Bioethics Conference" (68 + 3)


 
 
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■2009/06/14
"We Need Enough Discussion on Medical Care" ("How will the Revision of Organ Transplantation Law Change Organ Transplantation?")
AMADA Josuke (天田城介)
Associate Professor, Ritsumeikan University
The Kyoto Shimbun June 14, 2009 Morning Edition:3

Although I am not an expert on organ transplantation, I can clealy say what "politics"should do.

Four plans of the revision of the law can be separated A from B, C and D based on "brain death equal death of people", separated A, B and D from C based on tightening of determination of brain death, and separated AD from BC based on with or without decisions of the invloved persons under age. However, what politics should do is not such things as the scientific theory and view of life and death.

There are fundamental problems that cannot be seen due to presentation of an emotionally-charged argument of "whether we should help children that can ba alive" by forcing us to choose whether brain death should be regarded as human death, and whether organ transplantation should be conducted.

First, the most important "issue of sharing" has not been discussed. What politics should do is to provide all people with such things as enough medical care and alternative medical care instead of transplantion, decrease the number of traffic accidents and improve the emergency medical system. It is wrong to propose the either-or problem under the condition of not having taken enough measures against people who need organ transplantation and "brain-dead persons". What has not been discussed "hiatus of 12 years" is issues of distribution through medical care, welfare, care, income and so on.

Second, why shouldn't politicians discuss live organ transplant at the same time? It is necessary to reexamine the way of our society where only organ donors become the victims and suffer from both physical and mental burdens. Have they ever considered the reality in which persons in a vulnerable position within a family can suffer from anguish and burdens under the name of "love" and "initiative"?

"Organ transplantation" is approved only by an individual's organ donation and organ donation cannot be "shared". However, it should be a politics' job to develop the society where "problems that cannot be shared" can be "shared" utmost.


 
 
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■2009/06/16
Perfunctory Diet Discussion (Kochi Shinbun "Shaking Organ Transplantation Law" 1)
KOMATSU Yoshihiko
 Bioethics Conference Chairperson, Professor at Tokyo University of Marine Science and Technology
Kochi Shinbun June 16, 2009 Morning Edition
 http://203.139.202.230/rensai99/zouki01.htm

In this session of the Diet, the move to revise the Organ Transplantation Law gained speed, and House of Representatives is going to adopted it even this week. The Organ Transplantation Law was established in 1997, and it allows to take out organs from brain dead people. The first organ transplantation under this Law was carried out in Kochi Red Cross Hospital in February 1999. It was such a sensational event, so many people still remember it clearly, I suppose.

However, only 81 brain dead people (donors) provided organs in eleven and a half years, from the time when the Organ Transplantation Law became effective until this June. It was much fewer than expected. Many people say "WHO's new guidelines for organ transplantation demand each country should be 'self-sufficient' with domestic organs and prevent going overseas for the organ transplantation". Therefore, they say, Japan also need to revise the Law to increase the number of donors inside Japan. However, there are huge problems like I explain below about revision of law.

■What is said on the WHO's new guidelines is a false report
First, the contents of so called WHO's new guidelines is a completely false report. What actually written is the protection of donors for live organ transplantation, and prevention of organ transplantation tourism (organ buying tour to the Third World). It doesn't say anything about limiting overseas organ transplantation nor principle of "self-sufficiency". However, groups like Japan Society for Transplantation and Japan Transplant Recipients Organization made noise of false report, media also report it dramatically, and urged the society and the Diet to revise the Law. If those organizations and media have been spreading the false report without properly reading the new guidelines, then their social responsibility should be questioned. If they have spread the false report on purpose, then their ethical responsibility should be accused.
 
■Terminating the insurance?
Second, "brain death = death" has not been scientifically proved. It is true that brain dead is the situation when brain become severely unfunctional. But becoming the brain dead situation and determining that situation means death is a completely different matter. The ethics which connected the two have already broken scientifically. For example, we cannot say patients with insufficient kidney or heart are dead when they live with artificial dialysis or heart pacemakers. It's same in case of brain. We cannot say patients with insufficient brain are dead, although they are called brain dead.

In addition to that, quite many brain dead people survive long time. Some are in japan. The world's longest brain dead surviver lived for 21 years. The infant who was diagnosed as brain dead at the age of four, grew up to be the adult of 150 cm tall and weighed 60 kg, and also matured sexually. Brain dead people definitely pulse, keep warm body, and sometime sweat or cry. I've seen some of these state myself. They can give birth to a child if they were pregnant, and sometimes can move smoothly which is called Lazarus phenomenon. Because brain dead people are in such physiological situation, when their bodies are cut up to take out organs, their blood pressure and pulse increase and they struggle. Therefore, doctors have to use anesthesia or muscle relaxants. There was a case in the USA in 2008 that a patient recovered consciousness after he was determined as brain dead. If the Proposal A, which states all brain death is human death, is adopted in the Diet, the health insurance for the patients will most probably be terminated after they are determined as brain death. It surely will make them dead. Thus, brain dead people will be separated from this world by the law.
 
■Should expand the alternative medical treatment
Third, the revision of the Law will not solve the shortage of organs (shortage of brain dead people). Under the cover of voices that "only organ transplantation can save them", the development and usage of alternative medical treatment are forgotten. For example, there are 260,000 patients who need artificial dialysis in Japan, and we need 130,000 people brain dead by traffic accidents or something if we try to treat them all by kidney transplantation. What kind of society would produce so many brain dead people? Also, collapse of emergency medical service system has become a big problem in Japan recently. The government and the Diet should reconstruct the emergency medical service system, and try not to produce so many brain dead people to begin with. On the other hand, Nagano Prefectual Hospital for Children made a successful case for the infant with dilative cardiomyopathy. Normally, such infant is said to require heart transplantation. But the hospital saved the infant with pacemaker. The Government and the Diet should support to develop and expand such alternative medical treatment.

It is reported that "The Diet's discussion is taking shape". But the discussion in the Committee on Health, Welfare and Labor in the House of Representatives continued only eight hours. The life or death issue should not be determined only by major voting of lawmakers to begin with, but at least the Diet should thoroughly reconsider the above points before they decide the revision.

 
 
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■2009/06/17
"Cruelty of deciding which life to live and which life to die" (Kochi Shinbun "Shaking Organ Transplantation Law" 2)
TANAKA Tomohiko (田中智彦)
  Bioethics Conference; Associate Professor, Tokyo Medical & Dental University
 Kochi Shinbun June 17, 2009 Morning Edition
 http://203.139.202.230/rensai99/zouki02.htm

The Organ Transplantation Law is going to be revised. If Proposal A is adopted and all brain death is defined as human death, or if Proposal D is adopted and parents can allow their infant to be a donor, what kind of society we are going to face in future?

■Cruel Japanese?
It is said that only Proposal A or D can solve "shortage of organs". Media also reported so. However, even if Proposal A or D is adopted, "shortage of organs" problem will not be solved unless the number of brain dead patients increases. Most of brain dead patients are victims of traffic accidents or cerebral embolism. Therefore, as traffic accidents decrease and more emergency medical service is available, then there will be less brain dead patients.

Indeed, in Belgium, which is recognized as one of the "advanced countries of organ transplantation", thanks to the decade of effort to reduce traffic accidents, the number of organ donors has decreased. Therefore, they began to take out available organs from victims of murders, too. I suppose, everybody hope to reduce death toll of traffic accidents which is more than 5,000 per year today, and hope to re-establish the emergency medical service which is now "almost collapsed". It must be one of the most important responsibilities of the Government and the State, too. How much have the Diet members and media considered this fundamental contradiction that the number of brain dead and donor will surely decrease when the Government and the State properly fulfill their responsibilities.

This contradiction also suggest that Japan has fewer donors not because "Japanese are cruel". For example, in the USA, about 40,000 people die annually by traffic accidents, and only rich people can receive the benefit of emergency medical service because of the insurance structure. Many people are shot by gun as well. Therefore, we can say Japan has few donors because Japan is much safer society than the USA. And be aware, that the USA with so many death toll sill has the organ shortage problem.

■Deciding the value of life
These criticism often face the counter attack of "Then, those Japanese children who are waiting for organ transplantation just have to die?" However, few questioners understand that is a most cruel question to ask although it sounds full of goodwill.

Organs for transplanting to children will be taken out from the brain dead children. Determining brain death of children is said especially difficult, but there is more problems. In case of "long term brain dead" children, although they may need some help of artificial ventilators, they still they keep beating their hearts, keep breathing, keep their body warm, sweat and excrete, and they move and keep growing up. Their parents naturally see "life" in such children. Now, Proposal A and D suggest that "consent from parents" can allow children's organs to be taken out. This requires those parents to "approve" to let their children meet their end by receiving anesthesia and muscle relaxants, having their bodies cut, and having their beating heart taken away.

Still, people keep demanding "more organs" for both adults and children. Then, those voice sound saying as if "brain dead patients have no personality so they are not worthy of living. Therefore, they should offer their organs, at least, to other people who still have personality". If that so, this law revision is aiming, not to solve the organ shortage problem, but to decide which life is worth living and which life is not.

■The society on the turning point
Life of each person supports making the society together. The life of brain dead person is the weakest. Now that life is about to be sort out. Because it is the weakest life, very few people consider the issue as their own. However, once we allow it to happen, then "sorting of life" will be expanded to comatose or terminal phase patients, and then to mentally disabled people or dementia people. The society also loose the mind of appreciating the loved ones just being alive. Some health insurance card already have a section to write if the holders agree to donate their organs. We should consider what kind of society we are heading to.

We are on the turning point now. However, do we actually see the fundamental contradiction of the organ transplantation? Do we understand how cruel it is to ask more organs? Japan is a democratic country. Therefore, if a new "sorting of lives" is established, then all of us owe that responsibility as well.


 
 
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■2009/06/18
"Consider more before deciding" (Kochi Shinbun "Shaking Organ Transplantation Law" 3)
KURAMOCHI Takeshi (倉持 武)
  Bioethics Conference;  Professor, Matsumoto Dental University
Kochi Shinbun June 18, 2009 Morning Edition
http://203.139.202.230/rensai99/zouki03.htm

The present Organ Transplantation Law has been effective for more than a decade. During that period, 81 people donated their organs, and 345 transplantation operation were conducted, and 40 patients died although they received organ transplantation.

Under the existing law, the patients first have to declare their consent to offer their organs, then their family should agree with it. Only after that, doctors proceed to "legal brain death determination" as a death pronouncement, and if the patient is determined to be brain dead, then the organs may be taken out. Only people of 15 years old or older can state their will effectively, so there has been no infant heart transplantation in Japan.

There has been a big outcry of "Organ transplantation for children! Increase the available organs!". The Diet is about to revise the Organ Transplantation Law with four proposals. However, let's have a look of the issue before we join the national outcry.

■Donor pay the bill
There are mainly two kinds of brain death diagnoses. One kind is "clinical brain death diagnosis" to decide the treatment policy. In this case, patients continue to be alive even after they are diagnosed as brain dead, and medical treatment continues under the health insurance, and their right to life continue to be protected under the Constitution Article 25. The second is the "legal brain death diagnosis" as the death pronouncement to take out organs. Once the patient is diagnosed as brain dead, then death is pronounced, and all the medical treatment for the patient will be terminated at that point. After that, the treatment is carried out to reserve organs for the sake of recipient, and it will continue until the organs are taken out. The strange thing is, the health insurance covers only donors, so the medical bill to reserve organs for recipient is paid by donors (the current law, Supplementary Provision Article 11).

Also, the discussion in the Committee on Health, Welfare and Labor in June 5 exposed the poor situation of emergency services. According to a scientific research of the Committee in 2002, about 40% of patients who died in emergency medical service center because of the injuries could have been saved if proper treatment was available. That figure goes up to 60% in some emergency medical service centers. Japan is proud of the world lowest neonatal mortality rate, but its infant mortality rate goes down to 21st in the world. One of the reason for bad grade is partly caused by "cannot handle unexpected accidents". It is not easy to prevent victims of child abuse or Domestic Violence becoming donors, either. To begin with, there is only one organ providing institution in Japan which can officially determine brain death to children.

■After the organ transplantation
I wrote above that 40 people died after receiving organ transplantation. This figure came from the Japan Organ Transplant Network as of February 2009. However, the same Network said the figure was 45 in May 15, 2008. On the other hand, the joint survey of the Japanese Society for Clinical Renal Transplantation and the Japan Society for Transplantation found that only half of the 17,744 recipients who received kidney transplantation by 2004 are know the present condition. The Health, Labour and Welfare Ministry, the Japan Organ Transplant Network and the Japan Society for Transplantation should be responsible to understand the situation of recipients after organ transplantation. But how much do they know? I wonder.

On the other hand, there is a case like Zack Dunlap which was broadcasted via NBC TV. Dunlap's organs were about to be taken out. But, thanks to his family who had doubt on his brain dead diagnosis, he was saved and has recovered completely. Now he can enjoy fishing. Dunlap described the situation when doctors determined he was brain dead; he heard doctors saying "he was dead", and "I heard it and it just made me mad inside".

■Abandoned theory
By the way, the USA, in which Dunlap lives, gave up the total brain death theory. The ”Controversy on Definition of Death” which was announced in last December by the President's Bioethics Committee, discussed that brain is the organ controlling various functions of the whole body, so the total brain death theory based on organic synthesis idea has too much contradictions, and cannot be supported any longer. However, organ transplantation from a brain dead body has not been given up. Brain death organ transplantation is still carried out with the new medical theory of "drive" is created and introduced.

We need to remember that brain death organ transplantation requires to determine to gamble on recovery possibility of recipients while turning blind eyes to incomplete brain death diagnoses or lack of proper emergency medical services. Also, pronouncing human death to brain dead people is to follow the Dead Donor Rule, unwritten rules of transplant treatment that organs can be taken out only from dead bodies, or to prevent the accusation of murder.

 
 
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■2009/06/18
June 18, 2009
Emergency Statement on adopting Proposal A in the House of Representatives
Bioethics Conference (生命倫理会議)

Chairperson: KOMATSU Yoshihiko, Professor, Tokyo University of Marine Science and Technology
http://seimeirinrikaigi.blogspot.com/2009/06/blog-post_19.html

Bioethics Conference is a group of academics involved in education and research of bioethics. We announce "The Emergency Statement on revision of the Organ Transplantation Law" under the joint signatures of 71 people (68 + 3), and held a press conference at the Ministry of Health, Labour and Welfare Press Club in May 12. Also, we announced the statement "Demanding the Thorough Discussion on the Revision of the Organ Transplantation Law" with the joint signatures of 71 people in June 11, and sent this statement to basically all the lawmakers in the House of Representatives. As the specialists working on bioethics, we have pointed out various problems relating to the Law revision, and have demanded through discussion by lawmakers. (Please see the details at http://seimeirinrikaigi.blogspot.com/).

However, the House of Representatives discussed the issue for only a short time, and adopted the Proposal A, which is the most dangerous bill, based on the lawmakers' individual ideas on life and death. This situation will influence every Japanese people, and will greatly influence culture and society in the future. We are afraid that it will be the cause of great trouble in the future of Japan. Therefore, we announce below statement with our strong opposition, and sincerely demand the thorough and sensible discussions which consider the below problems in the House of Councilors.

1. There is a possibility that this revision has not follow the revision condition of the present Organ Transplantation Law.
The present Organ Transplantation Law states that "to consider the operational situation of the Law, and to examine its overall situation" is the major premise of revising the Law (Supplementary Provision Article 2). However, there are some questionable cases of legal or guidelines violation among 81 cases of brain dead determination and taking out of organs. The House of Representatives adopted the revision without thoroughly examining and studying this point. In addition to that, because Proposal A states brain dead patients are legally dead after the determination, the rights to life of the brain dead people, including young infants, would not be protected.

2. The Proposal A was adopted based on false information, without confirming what exactly is written in the WHO's new guidelines
Contrary to what people say or hear, WHO's new guidelines do not demand "limitation of overseas organ transplant" or "self-sufficiency of organs for transplant". On the contrary, Proposal A can be against the WHO's new guidelines which request "protection of underaged people" and "protection of legally powerless people". In addition to that, Proposal A allows organs to be took out without the "consent of the person" him or herself. This ignores the basic principle of the present Law. Thus, it is more like adopting "new law" than revising the present Law.

3. They ignored the fact that "brain death = human death" is not scientifically proved
In recent years, even Americans are forced to admit that "brain death is NOT human death". In this point, it is not emotional or anti-scientific that quite many people feel uncomfortable to treat brain dead people as "dead body", when they can still stay warm and keep pulsing, move smoothly (Lazarus phenomenon), and keep growing up. How much did lawmakers understand this fact when they supported the Proposal A?

4. This allows the "human death" to be defined only by majority voting of lawmakers
There has been no law defining human death in Japan. However, the House of Representatives adopted the Proposal A, which defined "brain death = human death", to increase the number of donors, without understanding the real situation of long-term brain dead patients and their families, nor scientific data on life-extending effect of organ transplantation. If the House of Councilors follow this attitude, the life and death of every Japanese people is to be decided by majority voting of the Diet members only. This is nothing but disastrous action.

5. Did lawmakers consider that increasing donors can violate their responsibilities to the Nation?
"The shortage of organs" means "the shortage of brain dead people". If there is less traffic accident, and more proper emergency services, there will be less "brain dead people" as well. It should be the basic responsibility of the governments and the Diet to realize the society that citizens can live safely and happily. The effort of building such happy society cannot increase "brain dead people = donor" at the same time. The Proposal A exactly exposes this contradiction greatly.

6. The existence of alternative medical treatment was not examined, and the lawmakers did not discuss about the national support for them
The treatment using pacemaker began saving infants with dilative cardiomyopathy instead of transplanting organs. There are more possibilities to save patients without transplanting organs, so the Governments should arrange more patients and citizens can receive such benefit first. Then, the aim of revising the Law to "solve the organ shortage" should be reconsidered.

To begin with, the life or death issue of human beings should not be decided by majority voting or switched with legal issues. If the House of Councilors also adopts the Proposal A, we are afraid serious problems will occur bioethically, legally and politically, and socially, as we stated above.

We demand again. The lawmakers in the House of Councilors should recognize their responsibility to all the Nations, future Japanese culture and society, and have thorough and complete discussions on this issue.


Joint Signatures of "Emergency Statement of Bioethics Conference" (68 + 3 signatures)

 
 
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■2009/06/21 
[Announcement] Citizens' Seminar Series on "Brain Death" and Organ Transplantation
Organized by Kansai Citizens' Group opposing "Brain Death" and Organ Transplantation
(「脳死」臓器移植に反対する関西市民の会)

The Diet began discussing the revision of the Organ Transplantation Law in May 27. The four proposal were presented and questions were answered. The Proposal A, which is called Kono proposal, states "brain death = human death". It is very dangerous. The Diet should discuss much more to expose the hidden dangers, together with national debate before they reach the conclusion. However, we are not sure there will be another session. There is a possibility that the revision will be adopted in the Plenary Session of House of Representatives easily. Then, we need to expect some action in the House of Councilors.

What we can do is to understand the issue and raise the voice of opposition from Osaka. To do so, we asked Dr. Kondo to talk us if it is really possible to determine brain death to children, and Ms Fujii, a member of Bakubaku no kai, to talk about her experience of supporting children's lives, like previous speaker Nakamura. This is a very rare opportunity. Please join us.

 Speaker: Dr. Kondo Takashi (近藤孝), FUJII Kaoru (藤井かおる, Bakubaku-no-kai)
 Date: June 21, 2009 14:00 - 17:00
 Venue: Osaka Prefecture Social Welfare Building

Organizer: Kansai Citizens' Group opposing "Brain Death" and Organ Transplantation
Contact: 06-6392-4441

 
 
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■2009/06/21
June 21, 2009
Emergency Statement against Proposal A to the Organ Transplantation Law, which increase the brain death determination to people who have not declared, or cannot declare, the consent
The group to establish the independent living in community for people with incurable diseases
(難病をもつ人の地域自立生活を確立する会)

Chairperson: YAMAMOTO Tsukuru
Tokyo, Japan
TEL 03-3296-7137 FAX 03-5282-0017

Our group consists of patients and disabled people themselves, and are working to realize our independent life by respecting each other's lives no matter what kind of diseases or disabilities we have. We are strongly threatened by the fact that Proposal A to revise the Organ Transplantation Law was passed in House of Representatives, even when the bill has severe problem of expanding brain death determination to people who have failed to declare their will. We see our lives are differentiated, and some lives are devaluated. If the Diet decide too quickly without considering below questions or demand, it will be the cause of future troubles on both sides. We demand more serious and thorough discussions in the House of Councilors.

[Question 1]
We need to confirm that there will be nobody who reject to be a donor among those people who have not declared, or cannot declare, their consent to donate their organs. If there was even a few percentage of such people, there will be a possibility that brain death is forced to the patients against their will, and their right to life would be violated. Even the recipient patients do not want to take out organs from unwilling people. We are afraid that Proposal A contains problems that will trouble families or recipients for coming years.

[Question 2]
Does "people who cannot declare their will to donate organs beforehand" include people with incurable diseases, intellectual disorders, mental disorders, or severe mental and physical disabilities? The third party can decide to proceed the brain death determination for those who failed to declare their will. If the third party can draw line between life and death for them, doesn't it differentiate the lives between the declared people and those who haven't?

[Question 3]
Children also face difficulty deciding on "brain death" or organ donation. Because it is such a difficult decision, children's right to worry, and their right to life, should be protected carefully and cautiously. If the family decide "life or death" of children without understanding how children are feeling, it will violate human rights of children, and will cause troubles in coming years.

[Question 4]
Opinion polls shows there are many people still hesitate and have not declared their will. Can the law be adopted by majority voting of the Diet, when that law can differentiate "life and death" of human lives by allowing the third party to decide for the sake of all people except those declared rejection?

We demand:
1. The Organ Transplantation Law should not be applied to people who have not declared, or cannot declare, their will to donate organs. It should not let family or anybody else to make "life or death" decision

2. There has not been enough discussion or national consensus to make brain death as human death. Please urgently set up the discussion opportunity like Brain Death Study Group so that experts, legal scholars, and related parties from both sides can equally discuss on this issue. Do not revise the law without open discussion or data examination.

 
 
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The 14th Emergency Meeting to consider corruption of "the Organ Transplantation Law"

■2009/06/24
[Announcement] In the Diet seminar
The 14th Emergency Meeting to consider corruption of "the Organ Transplantation Law"
 "It was a lie! WHO's new guidelines is NOT limiting overseas organ transplantation
 Please consider carefully in the House of Councilors! "


 Date: June 24, 2009 3:00pm - 5:00pm
 Venue: House of Councilors Diet Members' Building Conference Room 1

◆Seminar: "Brain death determination is unscientific, and dangerous"  Speaker: KONDO Takashi (Healthcare Corporation Nanrokai, Hospital Director of Kiwa Hospital, Member of Japan Neurosurgical Society, Member of Japanese Association of Acute Medicine)

Dr. Kondo is a neurosurgical doctor, and has seen the front line of brain death organ transplantation in Pittsburgh University Hospital in the USA. From that experience, he says "brain death determination" is unscientific. It can go against treatment of patients, or worse than that, dangerous to the patients. There are many long-term "brain dead" patients reported. Some patients recovered voluntary breathing or electroencephalogram after they are determined as brain death with non-breathing test. He will talk about problems and contradictions in revising the Law to define "brain death" = human death.

◆Proposal from religious field: "Start the second Brain Death Study Group (Noshi Rincho)!"

◆Messages
・Yang Sogil, the author of Children in the Dark (tentative)
・A nurse who took care of "brain dead" child
・"Bakubaku no kai" The Parents' Group of Children with Artificial Ventilators, and others  Report from the audience

The Plenary Session of the House of Representatives adopted the Bill A to the Organ Transplantation Law in June 18. It was a quickly made decision, to value the result rather than to discuss the issue properly. This is a revision of the important law which influence life and death of all of us. It will cause huge troubles in future if we let it go ahead like this. The House of Councilors should discuss the issue throughly with questioning experts from various fields.

Japanese Association of Religious Organizations has suggested to "set up the second Brain Death Study Group before revising the Law, review the concept of brain death in the 1992 report of the 1st Study Group, and discuss problems of brain death organ transplantation to children."

WHO's new guideline does not demand "prohibition of overseas organ transplantation". WHO demands to regulate the human trafficking, organ trade, and commercial transplant tourism which cause international human rights violation, and to establish rules for live organ transplantation, "protection of underaged people" and "protection of legally powerless people". Can these problems be solved by the revision saying "self-sufficiency of organs in Japan"?

Instead, we should realize the safe society which does not create so many "brain dead" people, with less traffic accidents and suicides, more emergency medical service, and no crime. The House of Councilors should discuss from this standpoint. Please join our in the Diet seminar.

◆Organizer: Citizens Network Against Corrupting the Organ Transplantation Law (「臓器移植法」改悪に反対する市民ネットワーク)
◆Contact: Consumers Union of Japan http://www.nishoren.org/en/
 In Diet Contact: ABE Tomoko office (阿部知子事務所) 03 3508 7303, KAWATA Ryuhei office (川田龍平事務所) 03 3508 8202


 
 
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■2009/06/25
On the revision of the Organ Transplantation Law passing the House of Representatives
OGINO Miho (荻野美穂)
 Professor, Graduate School of Doshisha University
 Women's Action Network Opinions June 25
 http://wan.or.jp/modules/articles0/index.php?page=article&storyid=23

The House of Representatives voted on the four revision bills to the Organ Transplantation Law (established in 1997) in June 18, and the majority voted for and adopted the Proposal A, which allows to take out organs from infants of zero years old as long as the family agree to it. The bill has to pass the House of Councilors to revise the Law, and the House of Councilors are said to be more cautious so it may fail to pass. It can be a rejected bill if the House of Representative is dissolved because of some political reasons.

Even if the bill is rejected (actually, I hope so), questions and regret remains: How many of the lawmakers who voted for Proposal A really understand the problem of brain death organ transplantation, and understand what the result of their vote will cause?

To begin with, brain dead organ transplantation is a medical treatment which is available only by taking out organs from another patients who are determined to be "brain dead". Therefore, this treatment requires somebody else to get in the situation diagnosed as "brain death" by traffic accident or illness or crime or abuse. Most of the media report something like "my child will be saved if organ transplantation is possible in Japan", calling for audience's sympathy. But, remember, organs to transplant do not pop-up from nowhere.

"Shortage of organs" means "shortage of brain dead people". If all of 260,000 patients who are under artificial dialysis now in Japan are treated by brain dead organ transplantation, about 130,000 people need to be determined as "brain dead" because of traffic accidents or something. Do we really hope the society that so many people would be brain dead?

People say that the USA, one of organ transplantation advanced countries, have many donors because there are many traffic accidents and gun murders. Still, the USA faces "organ shortage" problems. Therefore, America is going for live organ transplant - on the contrary to Japan. In fact, "the society with ample organs from brain dead people" could be very scary.

The Diet mainly focused on the problem of children for this revision proposal. In Japan, organs cannot be taken out from children, so children have to go overseas for organ transplantation. Among various questions about "brain death" could really be "human death", determining brain death on children must be especially careful. There should never be a situation that children are forced to earlier death and become the resource of organs, after they are determined to be "brain dead" because of traffic accidents or abuse.

What the Government, lawmakers, and doctors should really do is to develop medical treatment alternative to organ transplantation, rather than how to secure more brain dead donors.

By the way, the Bioethics Conference, which consists of university scholars and I'm a member of, announced the emergency statements on careless revision of the Organ Transplantation Law. Please check their criticism and proposal on their website.


 
 
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■2009/06/25
June 25, 2009
Statement against "revision" of the Organ Transplantation Law
The National Alliance of Disabled People against "Maternity Medical Supplement System" based on Eugenic Concept (優生思想に基づく「産科医 療補償制度」に抗議する障害当事者全国連合)


Dear Lawmakers in the House of Councilors,

We, "the National Alliance of Disabled People against 'Maternity Medical Supplement System' based on Eugenics Concept" strongly oppose the revision of the Organ Transplantation Law.

1. Please oppose revising the Organ Transplantation Law to define all "brain death" as human death, and allow family to take out organs.

2. Please discuss thoroughly to drastically improve the medical situation in Japan, including the problems of emergency services and development of medical technologies.

3. Please secure enough time to discuss carefully and thoroughly on the revision proposals for the Organ Transplantation Law in the Committee on Health, Welfare and Labor

We are the voluntary group of people with whole-body disability, mainly because of cerebral palsy in Japan. We have been appealing to the Diet and the Health, Labour and Welfare Ministry to oppose 'Maternity Medical Supplement System' based on eugenic concept because it targets children with cerebral palsy.

Four proposal to "revise" the Organ Transplantation Law were handed in the Diet, and the Plenary Session of the House of Representatives adopted the Proposal A in June 18, and the bill was sent to the House of Councilors.

We understand the problem of organ transplantation is very serious and complicated. We understand it is a fundamental problem how to value human lives, and how to recognize and understand each other.

However, the Proposal A define all "brain death" as "human death". Who can really be sure about it 100%? It also allows the family to decide taking out organs from the children under the age of 15. Many cases are reported that "brain dead" children recovered after the diagnoses. Determining human death will terminate any possibility of that patient. There is no going back. Therefore, it requires careful and cautious discussion to decide on such issue.

People with whole-body disabilities, like cerebral palsy, have been treated as "troublesome" or "existence which should not exist". Many patients have been killed. Even today, we are same as being killed, by socially ignored and oppressed.

Because of that, people with cerebral palsy or severe disabilities have to be sensitive about the definition of death, or the value judgment of life. Such ideas decide our own tomorrow, or more than that, today's life.

Every person in fact wants to live. Many of the people with cerebral palsy or severe disabilities want to live. Some might want to choose the dignified death. However, it might be because of the pain and suffering from their own bodies, but most of the time, it is because they are sorry to people around them, or want to get away from troubles with other people. We believe we should recognize that situation.

We can never admit the revision of the Law to define all brain death as human death, and to allow the family to decide the life of children under the age of 15. We have been appealing to the public that children with whole-body disabilities are independent human beings and are separate beings from our parents. The revision to let parents decide on children's brain death will destroy our decades of effort in vein.

This is a really complicated problem. We believe the lawmakers should listen to the concerned parties, including people with disabilities or incurable diseases, and discuss carefully and cautiously.


 
 
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■2009/06/26
About the Revision of the Organ Transplantation Law
WASHIDA Kiyokazu (鷲田清一)
  President, Osaka University, Philosopher
  Allatanys news guide, June 26, 2009
  http://allatanys.jp/B001/UGC020005320090626COK00327.html


 
 
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■2009/06/27
Dismal situation of the organ transplantation advanced America: About the Proposal A of the Organ Transplantation Law
MORIOKA Masahiro (森岡正博)

Asahi Shimbun June 27, 2009 Morning Edition)
  http://www.lifestudies.org/jp/ishokuho06.htm
  Life Study Thinking on the Organ Transplantation Law revision
  http://www.lifestudies.org/jp/ishokuho.htm

The House of Representatives adopted the revision proposal A to the Organ Transplantation Law in their plenary session in June 18. But this proposal A has serious problems.

The current Organ Transplantation Law allows to proceed to brain death determination and take out organs only when the patient has declared written consent and the family agree with it. About 52% of the Japanese people agree with this idea, according to the opinion poll conducted by the Cabinet Office last year. However, the proposal A allow brain death organ transplantation only with the family's agreement, even the patient him or herself has not consented. This ignores the opinion of more than half the Nations.

More serious problem is that it allows taking out organs from young brain dead children. Recent studies have disclosed that, in case of children, some brain dead children survive long term, and keep growing up, replace teeth, gain adult facial expression, or strain to excrete. The proposal A defines all brain dead as "dead bodies", including brain dead children who have potential to grow up, and allow to take out organs from them.

The House of Councilors should reconfirm the premise of "the person's own consent beforehand", and to discuss about protecting life of brain dead children.

Let's see the situation in the USA. The proposal A was handed in, aiming Japanese can do brain death organ transplantation like Americans do. In that country, the President's Bioethics Committee handed in the report called "Controversy on Definition of Death" in December 2008.

The report is positive to brain death. Still, it obediently admits the concept of brain death has been questioned because of cases like long-term brain death. Americans also face the shortage of organs because families do not admit brain death as human death. In order to solve that problem, the report pays attention to the Controlled DCD method.

This method takes the artificial ventilator away from the patient, whose brain is severely damaged but still maintains a bit of faculty. It requires consent of the patient or the family. Then, doctors wait 2 to 5 minutes after the heart stops beating. Brain cells are considered to die away because blood flow is stopped. The waiting transplant team take out organs immediately.

In other words, this method artificially stops heart of patients whose brain is still alive, and take out organs immediately. This is called Pittsburgh method. It was established in 1992, and 793 cases were conducted in 2007.

Candidates for this method are patients with artificial ventilator whose brain is still functioning. Specifically, in addition to patients with severe brain damage, patients of high spinal cord injury and terminal phase of amyotrophic lateral sclerosis will be the potential patients of this method.

The report says this method is not essential because we should be based on the concept of brain death. Still, the report suggests this method can gain support from those who cannot admit brain death as human death, so it might be an idea to switch to take out organs after cardiac arrest.

The Pittsburgh method is criticized by experts, too. They question if it is ethically allowed to let alive people die on purpose, or they might recover if revived even after the cardiac arrest.

Many people think this is very dangerous idea, especially when it is connected with mercy killing or dignified death.

In spite of questions and criticisms, the Pittsburgh method is spreading rapidly in the USA, with the back up of the United Network for Organ Sharing.

Japan will also fall into a dismal situation of killing alive people to take out organs, if we haste seeking solution to organ shortage as our primary aim.


 
 
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■2009/06/29
June 29, 2009
Statement against the corruption of brain death and the Organ Transplantation Law
Zenshoren: The National Alliance of Disabled People Liberation Movement (全国障害者解放運動連絡会議: 全障連)

Chairperson: HIRAI Seiichi
 
Zenshoren has been working to liberate disabled people and protect their human rights, by opposing any discrimination against disabled people, for our independent and liberation, since 1976. Our movement has demanded the right to life for disabled people through preventing mandatory attendance to schools for handicapped children, anti-discrimination and impeachment movement, fight against eugenics concept, and so on.

In June 18, the "corrupting proposal" to the Organ Transplantation Law was adopted in the House of Representatives plenary session, and then in June 26, the bill was presented in the House of Councilors plenary session. Now it is going to be adopted in the regular session of the Diet. Here, we state our position on this situation.

1. "Brain death" is NOT "human death". There are cases that "brain dead" people lived more than 10 years, or recover their consciousness later and heard voices around them. Especially, it is pointed out that determining "brain dead" to children is extremely difficult. Many "brain dead" children continued to live and grow up. Thus, we cannot say "brain death" is "human death".

2. The corruption of brain death and the Organ Transplantation Law is trying to socially establish the view of life and death, which separate "valuable life" and "valueless life", and allow to eliminate "valueless life". That is strengthening eugenic concept, and it opens the legalization of "mercy killing, dignified death". There have been many court cases on killing patients by taking off artificial ventilators and other methods in various hospitals. "The Guidelines for the Determination Process on Terminal Phase Medical Treatment" is stated. However, by changing brain death and the Organ Transplantation Law worse, we are afraid the problems of taking artificial ventilators off would increase.

3. In addition to that, worsened Law will influence disabled people by ignoring their will. Some people with severe disabilities cannot express their will in "normal way" as people without disabilities. Also, we fear the worsened Law expands the targeted patients by modifying the definition of "brain death" by including "persistent disturbance of consciousness" to take out organs, by making the difference vague between self-breathing "persistent disturbance of consciousness" and "brain death".

4. The worsening of "Brain death - the Organ Transplantation Law" promotes "medical treatment waiting for somebody else's death", and "medical treatment which save life on other's death". Determining "brain death" itself encourages killing of patient. For example, "no-breathing test" takes off an artificial ventilator for several to 10 minutes from the patients suffering to death. This is medicine of "death first". This time revision aims to lower the age limit of donors and to expand the definition of "brain death" because of the pressure from WHO's restriction on overseas organ transplant.

5. The welfare and medical budget has been reduced these days, and we worry that worsening of "Brain death - the Organ Transplantation Law" will promote the era when human lives are valued less and can be forcedly made "donors" or terminated treatment whenever it is necessary to the others. Especially, proposal A surely increase the number of "cut off" of lives by defining "all brain death are human death". The Proposal A ignored the current Law which says "only in the case of organ transplantation, the patient receive the legal determination of brain death". Therefore, the patients can be determined as brain death, and terminated any further treatment, even when they are not to donate organs. And as long as patients have to bear the cost of medical treatment, low income family firstly will be forced to consent "brain death - organ donation" under the name of "self decision" and "declaration of will". It will push more cut down of emergency medical services.

We, Zenshoren, strongly oppose to corrupt the "Brain death - the Organ Transplantation Law.


Contact information:
Zenshoren: The National Alliance of Disabled People Liberation Movement (全国障害者解放運動連絡会議: 全障連)
Osaka, Japan
email: zensyouren(@→@)cameo.plala.or.jp


 
 
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■2009/06/30
The Paradox of "brain death"
TAKAKUSAGI Koichi (高草木光一)
  Professor, Keio University
 People's Plan Institute, Opinion, June 30
 http://www.peoples-plan.org/jp/modules/article/index.php?content_id=14

(snip)
"Organ transplantation" technology, which is the aim of "brain death", is nothing but a meaningless flower of the time. Today, Japan supports (maybe too much) basic research of regenerative medicine like iPS cell study of professor YAMANAKA Shinya of Kyoto University. If this technology has developed, we can make organs with the patient's own gene, and there will be no need for taking out organs from somebody else. Then, no need to discuss on "brain death" from that point. Even without waiting for "regenerative medicine", alternative medical treatments are being developed to replace organ transplantation. There will be less and less cases that can be saved only by transplanting organs. I believe, therefore, the proposal A which define "brain death = human death" is twisting the humanity's most fundamental issue of "life and death" only for a transitional technology of "organ transplantation".
(snip)
What need to be clarified is that once "brain death", which is "acceleration of death", become legal death, then that will be the foundation for legalizing "dignified death". "The Group of Lawmakers who Promote Legalization of Dignified Death" has already handed in the outline of bills. The chairperson of that group is NAKAYAMA Taro, ex- Foreign Minister, who proposed the Proposal A for the Organ Transplantation Law. As you can see in case of Old-old health care system, at which the whole nation frowned since it began in April 2008, the trend of reducing medical benefits has been the main stream. It would be very convenient for the National budget if they can cut medical benefit to elderly and other people under the sympathetic cover of "dignified death". When you think about it, it's possible to think that the Proposal A to define "brain death = human death" was handed in not only for "organ transplantation" but also for something beyond it. In any case, this revision of the Organ Transplantation Law can make the turning point of medical policies in future.
(snip)


 
 
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■2009/06/30
June 30, 2009
Emergency Statement demanding careful discussion in the House of Councilors, opposing the revision of Organ Transplantation Law
Non Profit Organization Japan National Assembly of Disabled Peoples' International (DPI-Japan)

Chairperson: MISAWA Ryo (三澤 了)
 http://dpi.cocolog-nifty.com/vooo/2009/07/post-df08.html

(Reference: Our previous Emergency Statement in May 28.)   http://dpi.cocolog-nifty.com/vooo/2009/05/528-2f90.html

Disabled Peoples' International (DPI) is organized by disabled people themselves with the policy of "A Voice Of Our Own". DPI is an international non-government organization recognized by the United Nation. Japan National Assembly of Disabled Peoples' International was established in 1986, and has promoted human rights of disabled people and supported their independent life in their own community. Internationally we have worked for the establishment of the Convention on the Rights of Persons with Disabilities in the United Nations, and domestically have worked for the Services and Supports for Persons with Disabilities Act and barrier-free law and related effort.

Many disabled people's organizations gather at Japan National Assembly of DPI. Their disabilities vary from physical, intellectual, mental disorders, or incurable diseases. We are especially working hard so that people can live in community no matter how severe their disabilities are like cerebral palsy or ALS which make their whole bodies immobile. We also oppose the eugenic concept which states "disabled people = undesired existence", and we have been working to abolish the "Eugenics Protction Law".

It is obvious that any lives should be valued equally to make the society any disabled people can live in community.


DPI-Japan urgently announced its opposition against the "revision" of the Organ Transplantation Law in May 28. However, our voice was ignored, and the plenary session of the House of Representatives adopted the Proposal A, which defined "brain death = human death" in June 18. We face great anger and fear on this too quick and easy process of adoption, without careful discussion, while many have opposed, criticized, and worried about the revision.

"Do not decide about us without us."

We should pause now to reconsider the issue, not to leave cause of troubles in the future. Here, we restate our opinions, and strongly hope the House of Councilors will discuss with out voices, as the "Chamber of Wisdom".

1. There are many questionable cases happening in the world about "brain death". Some brain-dead people lived for decades, or some recovered their consciousness and could hear voices. We cannot be convinced that it is OK to take out organs from warm body with beating heart by deciding them "Dead". The idea of devaluing lives of disabled people like saying "the patients might recover, but will have disabilities" is believe to be in their mind when people define "brain death" as "human death". Choosing which lives are worthy of living and which are denied to live is concept of Eugenics. We cannot agree with this idea from the standpoint of protecting human rights of disabled people.

2. This urge of revision was pushed by the WHO who demands to secure organs domestically to avoid transplant tourism. We oppose such revision to provide more organs in Japan by reducing the age limit of donors or expanding the definition of "brain death". Disabled people have been prejudiced as "no own opinion" and ignored their subjective will for long time. Some disabled people lack "normal" method of communication of other people to tell their will because of the severe disabilities. We have great fear because of that situation. Especially these days, the budget for welfare and medical treatment is suppressed in Japan. In such social situation, we are afraid that our lives are devalued, and other people decide to stop our treatment and make us "donors" to take out organs from our bodies. We are afraid this revision is the foretaste for such future.

3. What we need now is to establish the proper medical treatment so that people with disabilities - no matter how severe their disabilities or illness are - can survive, instead of relying on "other people's death" to save the patients. Also, the rooted discriminating belief of "disabilities = unhappiness" is backed by the lack of social support for them. Therefore, it is necessary to provide the satisfactory welfare services which enable any disabled people can live independently, as a human being, in the community.

4. The United Nations adopted the Convention on the Rights of Persons with Disabilities in December 2006, and it became effective in May 2008. Japan is urged to arrange domestic legal systems to ratify the Convention. The basic principle of the Convention is "Nothing About Us, Without Us!" Therefore, we strongly require to consider the revision of law from the standpoint to protect human lives of disabled people equally.

[Contact]
Japan National Assembly of Disabled Peoples' International (DPI-Japan)
5th floor Musashino Building, 3-11-8, Kanda-nishikicho, Chiyoda, Tokyo, 101-0054, JAPAN
TEL 81-3-5282-3730, FAX 81-3-5282-0017
E-mail office@dpi-japan.org
http://www.dpi-japan.org/english/


 
 
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■2009/07/01
Opinion statement on the Organ Transplantation Law revision discussion in the House of Councilors
Japanese Association of Religious Organizations (日本宗教連盟)

http://www.jaoro.or.jp/activity/state_zouki_210701.html

Japanese Association of Religious Organizations state below opinions from the standpoint of religious leader about the Organ Transplantation Law revision discussion in the House of Councilors

As the religious leaders, we believe each life in this world is equally important and precious in any religion. On the other hand, we believe brain death organ transplantation cannot be universal medical treatment as long as it requires important organs taken away from alive bodies of others. From this point of view, we demand the House of Councilors to discuss carefully with below points in consideration, in order to prevent any violation of "respect on life" on both donors and recipients.

Many children are reported to continue growing taller and heavier after the brain death diagnoses. Also, still many Japanese accept "human death" by "Three signs of death" so we should regulate "define brain death as human death only in case of transplanting organs" (respect of current Law).

We might find out from letters or diary that the patients themselves did not hope to donate organs after they are determined to be brain dead and their organs are taken away. In order to protect donor's "respect of life", we should require "written consent of the patient" (respect of current Law".

About taking out organs from brain dead children, we should establish the system to protect children. Children have stronger recovery capability than adults, so there should be more strict standard to determine brain death, and exclude abused children from becoming donors, and so on.

To consider the above three points, and to solve various problems Japan faces on brain death organ transplantation, we should quickly set up the "second Brain Death Study Group" to begin the concentrated examination.

The revision of the Organ Transplantation Law influences view of life and death of every nationals. It especially influence our children, who should lead the future generation. Therefore, adopting the revision while it contains problems, will cause many troubles in Japanese culture and society in future. We strongly demand the House of Councilors will consider this issue carefully and cautiously as the chamber of wisdom.

July 1, 2009
Japanese Association of Religious Organizations (財団法人 日本宗教連盟)
Chairperson: OKANO Seiho (理事長 岡野聖法)


 
 
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■2009/07/03
"Discuss with understanding the complicated facts" (Consider Life and Death On the revision of Organ Transplantation Law 1)
NAMIHIRA Emiko (波平恵美子)
, Honorary Professor, Ochanomizu University
Asahi Shimbun, July 3, 2009 Morning Edition page 3
 
(snip)
Actually, the process of discussion is important for this issue, but they focused only on age limit. (snip)

There must be the lack of reality at the base, which covers the society as a whole. While many books on cancer experience are published, very few pay attention to the fact that 30,000 people commit suicide in this country annually. This strange separation is symbolic. People lack the habit to relate problems, from life extension issue of their parents to problems of neighbors, to more bigger social issues like medical system as a whole.

In terms of cultural anthropology, gift (donation) can stand on accumulation of social relationship. The issue of organ transplantation is related to every aspect of society. We should not be sidetracked by today's political trend trying to focus on easy-to-understand matter only. We should discuss carefully, understanding complexity of reality from every possible angles, on this life and death issue.


 
 
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■2009/07/03
"Don't destroy the foundation of Bioethics" (Consider Life and Death On the revision of Organ Transplantation Law 1) SHIMAZONO Susumu (島薗進), Professor (Religious Study), University of Tokyo
Asahi Shimbun, July 3, Morning Edition page 3


To begin with, "brain death" is a concept made to take organs out for transplantation. Brain death has not developed from human view on life and death or experience of bereavement. Defining all the brain dead as human dead, when they keep blood circulating, stay warm, and can bear babies, forces foreign standard into the culture of death of human culture. The life view on brain leave questions scientifically. It also cause troubles with family's attitude who respect the separation from the dead.

The Government's committee has not worked enough to establish the National consensus on such an important issue. That caused irresponsible handling, and chaos. Western countries have been developing foundation of bioethics as opinions from Christian background and opposing theories argue each other. Japan lacks specific solid religious tradition. So Japanese tend to skip discussion on ethical view, and just follow Western countries.

The proposal A, which was adopted in the House of Representatives very carelessly torn down the premis of life and medical bioethics. Two points; can we define all brain death = human death, and can we determine without the patient's own consent? We should leave it possible to take organs out from brain dead people, for those who need organ transplantation and those who are willing to donate their organs. However, can we break down the foundation of bioethics? It is possible that doctors at the sight hurry to determine brain death, and abandon those who might be able to recover. We should decide on the solid foundation, so that medical professionals can handled clinical scene of death with confidence.

 
 
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■2009/07/03
Petition on the revision of Organ Transplantation Law
Japan National Group of Mentally Disabled People (全国「精神病」者集団)


We appreciate for your effort for life and medical treatment of the Nations. We, Japan National Group of Mentally Disabled People, demand the following points as a disabled people's group on the revision of the Organ Transplantation Law.

1. We oppose to define all "brain death" as "human death". Brain dead situation is a kind of severe disabilities. Therefore, we strongly oppose to violate the right to life of disabled people. It is based on the eugenic concept which value life of disabled people less than the others. In the USA, where doctors follow this lead, careless termination of treatment or sorting of lives are promoted.

2. If only way to refuse the very invasive medical disturbance like taking out of organ is to "refuse beforehand" or "family disagree", it will violate human rights after death. Also, there are certain people, like children, who cannot declare their refusal.

3. This is the issue on human lives of the Nations. Please discuss thoroughly even you might need to drop it. Don't decide the deadline first, and work on it in a haste. Also, it is a problem to invite favorite side to the hearing. Please invite families of "long term brain dead" children, doctors who believe "brain death determination is unscientific", lawyers who handle human rights problems on taking out "brain death" organs, and disabled people's organizations who are opposing the corruption of the Organ Transplantation Law.

July 3, 2009

Japan National Group of Mentally Disabled People (全国「精神病」者集団)
c/o Kizunasha 2-39-3 Chuo, Nakano-ku
Tokyo 164-0011 Japan
http://www.jngmdp.org/e/

 
 
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■2009/07/05
Revision of the Organ Transplantation Law: Should have consistency with overall medical treatment
NUKATA Isao (額田 勲)
, Doctor, Chairperson of Kobe Bioethics Study Group
Asahi Shimbun, July 5th, Morning Edition, My Opinion

(snip)
In the severe reality that we have to distribute the limited medical resource efficiently under the medical cost policy, it should be most important to discuss consistency of brain death organ transplantation and overall medical treatment. However, the revision adopted in the House of Representatives only aims to increase the available organs. It can be called "Enforcement law to achieve more organs available". Their argument is that we have to "determine brain death is human death" to increase the number of available organs. However, we should consider problems that it can terminate medical treatment to brain dead patients, about the burden of medical cost, also about civil law issue of inheritance and so on.
(snip)


 
 
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■2009/07/07
From the Hearing at the Committee on Health, Welfare and Labor of the House of Councilors.
Morning Session - Hearing; Afternoon Session - Questioning the promoters of Proposal A


◆Morning session: Hearing from MORIOKA Masahiro (森岡正博)

MORIOKA Masahiro:
The Journal of Japan Medical Association published ex-Ministry of Health and Welfare paper in 2000 called "Standard of brain death determination for children".
This is the final authority deciding the standard of brain death determination for children in Japan.
Mr. Teraoka quoted this in his presentation.
The paper states as follows.
First, there were 20 cases that no-breath was confirmed, after strictly conducting no-breath test for more than two times to suspected brain dead children under the age of six.
This strictly satisfied the standard of brain death determination for children.
Among these 20 cases,
seven cases
survived as long-term brain death.
That means, 35% of children under the age of six who had no-breath text became long-term brain dead.
More surprisingly, four cases, 20%, kept their heart beating more than 100 days.
This is the fact presented in the medical journal.
After determining brain death with strictly conducted no-breath test, more than 30% of the brain dead children survived long term, and 20 % of them kept their heart beating more than 100 days.
We should remember this serious fact to begin with.
Why such an important fact was hidden from most of the Nationals. (snip)

One of the papers quoted in note of this paper is published in the Journal of Japanese Association for Acute Medicine in 2000. This paper introduced "the case of a child who continued being brain dead for more than 300 days". (snip)

I'll repeat again. In the case of Hyogo College Of Medicine, no-breath tests were conducted two times, leaving 24 hours between.
I understand there are media reporters in the audience. Please report the correct information about brain death to the readers.

Japan has not achieved the national consensus to take brain dead children, whose heart keep beating more than 100 days, whose body keep growing up, as dead bodies.
In addition to that, there is no medical standard to distinguish if a brain dead child survive long term or not.

- You can read all of the statement below:
  The natural right to grow up and die as a while (1)
  http://www.lifestudies.org/jp/marugoto.htm
  Life Studies: Think about the revision of Organ Transplantation Law
  http://www.lifestudies.org/jp/ishokuho.htm

◆Afternoon session: From the promoters of the Proposal A

○ISHII Midori (石井みどり), Member of the House of Councilors
Many point out about the problem of long-term brain death of children.
It is said that brain dead children keep growing up, while their hair or nail get longer and their teeth get replaced.
I think this situation would be more like severe brain disorders rather than brain dead. I've also heard that brain dead children gained weight after no-breath test. I have a feeling that accurate points are not made clear, and the Media also confuses various facts. I demand the accurate explanation.

○TOMIOKA Tsutomu (富岡勉), Member of the House of Representatives
I agree with you.
I understand that so-called long-term brain death cases are reported, in which brain dead children keep growing up, while their hair or nail get longer and their teeth get replaced.
However, in these cases, the patients were diagnosed as "clinical brain death".
It is different from the strict determination of legal brain death inspection, demanded in the Organ Transplantation Law, like no-breath test or two inspection leaving certain time.
Therefore, these children will not be considered as legally dead.
Of course, we have to be cautious about determining brain death for children,
but I think we need to distinguish "clinical brain death" and "legally determined as brain death".


 
 
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■2009/07/08
[Announcement] In the Diet seminar
The 15th Emergency Meeting to consider corruption of "the Organ Transplantation Law"

 Date: July 8, 2009 11:00 - 13:00
 Venue: House of Councilors Diet Members' Building Conference Room 6

Emergency Statement from Religious Field "Brain death is NOT human death"
1) Presentation
 Omoto (大本), Jyodo-shu (浄土宗), Jyodoshinshu Honganji West Honganji (浄土真宗本願寺派西本願寺), Shinshu Otani East Honganji (真宗 大谷派東本願寺), Tendai-shu (天台宗), Nichiren-shu (日蓮宗), Risshou Kouseikai (立正佼成会) *Also arranging other parties from Christianity

2) Introduction of statement
 Soto-shu (曹洞宗), Japanese Association of Religious Organization (日本宗教連盟)

3) Addresses from attending lawmakers and audience

The plenary session of the House of Councilors is going to vote on the controversial revision of the Organ Transplantation Law in July 10. The discussion in the House of Councilors has just begun. The House of Representatives discussed on it for eight hours only. How much can they discuss in that limited time? We should not treat such an important issue of human life and death in a political tactics for the snap general election. We should sit down and discuss properly.

To face this situation, seven religious groups gather to make the emergency statement to announce "brain death is NOT human death." Sorry for the short notice, but please come to hear them at the In House Seminar in July 8.

◆Organizer: Citizens Network Against Corrupting the Organ Transplantation Law (「臓器移植法」改悪に反対する市民ネットワーク)
◆Contact: Consumers Union of Japan http://www.nishoren.org/en/
 In Diet Contact: ABE Tomoko office (阿部知子事務所) 03 3508 7303, KAWATA Ryuhei office (川田龍平事務所) 03 3508 8202


 
 
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■2009/07/08
What is the real meaning of Proposal A to the Organ Transplantation Law
'Brain death = human death" to "Dignified death'
KOMATSU Yoshihiko

Sekai August 2009 (Iwanami Shoten) p. 47-53
http://www.iwanami.co.jp/sekai/

(from website of Iwanami Shoten)
The House of Representatives adopted the Proposal A to revise the Organ Transplantation Law in June 18. "The Organ Transplantation Law" allows to take organs out from brain dead people. In eleven and a half years, from its enforcement to the end of June this year, only 81 brain dead people donated their organs, and total of 345 organ transplantation operations were conducted. It is reported "WHO's new guidelines for organ transplantation restrict overseas organ transplantation and encourages each country to be self-sufficient of organs", and it urged the lawmakers to revise the Law to increase the number of donors in Japan. However, WHO's new guidelines don't say such things. What they actually promote is to protect donor of living organ transplantation, and to regulate transplant tourism (organs trading). Also, in the Proposal A, the sentences describing "define brain death as human death only when the patient's organ are donated" from the Article 6-2. Why the proposal A wants to make "all brain death = human death" so badly? This is the real aim of the Proposal A.

(Subheading of this article are as follows:)
- Reporting false information on WHO's new guidelines
- Long-term brain dead people: Scientifically broken logic of "brain death = human death"
- Why Proposal A? Published relationship with "Dignified Death"
- "Organ Transplantation is the only hope" Is it true?

About the author:
KOMATSU Yoshihiko: Professor at the Tokyo University of Marine Science and Technology. Chairperson of Bioethics Conference. Born in 1955. Majored in Bioethics. Author of "Real Stories of Brain Death Organ Transplantation" and others.

 
 
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■2009/07/10
[Petition] Demand for cautious discussion on the revision of Organ Transplantation Law
Japan National Group of Mentally Disabled People (全国「精神病」者集団)

We appreciate for your effort for life and medical treatment of the Nations. We understand the revision proposal A will be presented in July 10, and will be voted soon after free discussion.

We, Japan National Group of Mentally Disabled People, as a disabled people's group, strongly oppose the revision of the Organ Transplantation Law. Brain dead situation is a kind of severe disabilities. Therefore, we strongly oppose to violate the right to life of disabled people. It is based on the eugenic concept which value life of disabled people less than the others. In the USA, where doctors follow this lead, careless termination of treatment or sorting of lives are promoted.

If only way to refuse the very invasive medical disturbance like taking out of organ is to "refuse beforehand" or "family disagree" only, it will violate human rights after death. Also, there are certain people, like children, who cannot declare their refusal.

This is the issue which influence life of every citizen. We strongly demand the following for careful discussion.

We see the problem that the Diet mostly invited favorite side to the hearing. Please invite families of "long term brain dead" children, doctors who believe "brain death determination is unscientific", lawyers who handle human rights problems on taking out "brain death" organs, and disabled people's organizations who are opposing the corruption of the Organ Transplantation Law.

July 10, 2009

Japan National Group of Mentally Disabled People (全国「精神病」者集団)
c/o Kizunasha 2-39-3 Chuo, Nakano-ku
Tokyo 164-0011 Japan
http://www.jngmdp.org/e/

 
 
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■2009/07/12
[Announcement] Citizens' Seminar Series on "Brain Death" and Organ Transplantation
"We are alive! Message from parents and children with artificial ventilators"
Organized by Kansai Citizens' Group opposing "Brain Death" and Organ Transplantation


 Speaker: Bakubaku-no-kai
    A Nurse of Osaka Prefecture Hospital (Study Group on Brain Death and Organ Transplantation)
 Date: July 12, 2009 14:00 - 17:00
 Venue: Osaka Prefecture Social Welfare Building

Organizer: Kansai Citizens' Group opposing "Brain Death" and Organ Transplantation
Contact: 06-6392-4441

The revision proposal A of the Organ Transplantation Law was adopted in the House of Representatives, and the House of Councilors began discussion on the bill. It will define "brain death" as human death, and let parents donate their children's organs.

The member children of "Bakubaku-no-kai" live every day as much as they can, also they grow up as much as they can, although they are diagnosed as "brain dead" or "close to brain dead". If the proposal A is established, we are afraid the right to life of these children will be threatened.

In this seminar, the speakers talk their experiences as parents and children with artificial ventilators, and as a nurse working at the hospital which transplant organs.

Let's appeal our voice against "brain death" organ transplantation now. Please join us.

 
 
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■2009/07/13
It's dangerous to cover up everything with "Love" (Article on Revision of the Organ Transplantation Law adopted today)
DOI Kenji (土井健司)
, Professor, Kwansei Gakkuin University School of Theology, Christian Theology
Kobe Shinbun July 13, 2009 Morning Edition

The discussion for revision of the Law focuses on relaxing the conditions like lifting age limit or loosening donation consent. Aiming too much to increase available organs, they see role or functions of human bodies only. I understand the situation of those who are waiting for organ transplantation, but we have to remember to care dying people. There are so many problems if you haste for the result by just weighting two sides.

People often describe organ transplantation as "action of love" or "gift of life". However, aren't we avoiding to face the discussion of "is brain death a human death?" by using these words? It is very dangerous to cover up with "Love" to raise more donors, when the issue is originally related to our view of life and death.

Can we love somebody unknown and unrelated? Donated organs will be delivered to recipients via Organ Transplantation Network anonymously. I believe the spirit of philanthropy is to love everybody you are involved in your life without discrimination. We cannot relate love and organ donation so generally.

There are controversy to define brain death as human death. Human bodies die bit by bit. Most of cells are alive when the heart stops beating. In case of children's long term brain death, their body and nails continue to grow. In such phenomenon, which point is the point of human death? I doubt it can be defined scientifically.

I've seen my friends died in front of me, and I could experience death directly. They stop responding you when you call them. Finally you understand they are dead. That is a natural way to accept human death.

I understand brain dead bodies are warm and respond when you touch them. Of course, most people feel uncomfortable to call such people "dead bodies". Human death is not only scientific issue, but also cultural and social issue.

DOI Kenji: Studies Christian Theology. Board member of Japan Association for Bioethics, Trustee of Japanese Association for Religious Studies, Member of Bioethics Conference.

 
 
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■2009/07/13
July 13, 2009
Emergency Statement on establishment of the Revision A
Bioethics Conference (生命倫理会議)

Chairperson: KOMATSU Yoshihiko, Professor, Tokyo University of Marine Science and Technology
http://seimeirinrikaigi.blogspot.com/2009/07/blog-post_8864.html

Bioethics Conference is a group of academics involved in education and research of bioethics. We announce "The Emergency Statement on revision of the Organ Transplantation Law" under the joint signatures of 71 people (68 + 3), and held a press conference at the Ministry of Health, Labour and Welfare Press Club in May 12. Also, we announced the statement "Demanding the Thorough Discussion on the Revision of the Organ Transplantation Law" with the joint signatures of 71 people in June 11, and sent this statement to basically all the lawmakers in the House of Representatives. As the specialists working on bioethics, we have pointed out various problems relating to the Law revision, and have demanded through discussion by lawmakers. (Please see the details at http://seimeirinrikaigi.blogspot.com/).

However, the House of Representatives discussed the issue for only a short time, and adopted the Proposal A, which is the most dangerous bill, based on the lawmakers' individual ideas on life and death. We announced the "Emergency Statement" (with the joint signature of 71 people) on that day, June 18, and demanded the thorough discussion, at least in the House of Councilors. However, the House of Councilors also adopted the most dangerous proposal A, and this revision was established. Although the House of Councilors should be the "chamber of wisdom", but it discussed the issue only for eight hours, same with the House of Representatives, and left so many problems in the revision.

We, the Bioethics Conference, acknowledge the revision of Organ Transplantation Law is the issue of human life and death not only of brain dead patients but all the Japanese Nationals, and also the issue strongly influence the future of Japanese society and culture. Therefore, we state our opinions below, with our strongest anger and opposition against the revision proposal A.

1. The lawmakers ignored the fact that long-term brain death exists after strict determination
As MORIOKA Masahiro stated at the hearing of the House of Councilors, the previous government office, Ministry of Health and Welfare, published a paper which described that more than 30% of brain dead children became long-term brain death, and 20% of them kept beating their heart more than 100 days after strictly inspected and determined as brain death. Still, the promoters of the Proposal A ignored this fact for long time, and claimed that long-term brain death is not "legal brain death". This is a serious distortion of important fact on the brain death issue. After that, the Committee in the House of Councilors could no longer ignore this fact, but it was not properly considered before adopting the Proposal A. This is nothing but deceiving the Nations.

2. The lawmakers ignored the difficulty of deciding on abused children made donors
Child abuse has been serious problems in recent Japan. Because the Proposal A allows parents to decide for their children to have brain death determination and donate organs, it can be used to hide the evidence of abuse. This can violate human rights of children further. In addition to that, according to the research of Japan Pediatric Society, few pediatrician are positive about determination of abuse. The Diet established the Proposal A although the brain death determination of children is difficult, and it is difficult to decide if the child has been abused or not. There is high possibility that serious human right violation will occur. At that time, the responsibility of this revision should be questioned.

3. They ignored the fact that "brain death = human death" is not scientifically proved
In recent years, even Americans are forced to admit that "brain death is NOT human death". In this point, it is not emotional or anti-scientific that quite manypeople feel uncomfortable to make brain dead people "dead body", when they can still stay warm and keep pulsing, move smoothly (Lazarus phenomenon), and keep growing up. The Proposal A defined such scientifically unproven brain death as "human death" by politics and law. Japanese society will loose the reality of "venerableness of life" in future.

4. The lawmakers did not make sure the WHO's new guidelines, and discussed the issue on false information
Contrary to what people say or hear, WHO's new guidelines do not demand "limitation of overseas organ transplant" or "self-sufficiency of organs for transplant". On the contrary, Proposal A can be against the WHO's new guidelines which request "protection of underaged people" and "protection of legally powerless people". In addition to that, there is no fact that WHO supports the Proposal A. There is possibility that voting and adoption of Proposal A was based on misunderstanding or distortion of facts. The Nations will have no trust in Diet discussion.

5. The lawmakers did not consider that increasing donors can violate their responsibilities to the Nation
"The shortage of organs" means "the shortage of brain dead people". If there is less traffic accident, and more proper emergency services, there will be less "brain dead people" as well. It should be the basic responsibility of the governments and the Diet to realize the society that citizens can live safely and happily. The effort of building such happy society cannot increase "brain dead people = donor" at the same time. In that sense, the National Diet is same as declaring the safety of its citizens comes second by revising Law to "solve the shortage of organs."

6. The existence of alternative medical treatment should be informed to patients and citizens, and should be supported by the Government
The treatment using pacemaker or Batista surgery began saving infants with dilative cardiomyopathy instead of transplanting organs. There are more possibilities to save patients without transplanting organs, so the Governments should arrange more patients and citizens can receive such benefit, first. That can both help the patients waiting for organ transplantation, and the safety of the Nations. It should be the duty of the Governments and the Diet to expand that possibility. The aim of "solving the shortage of organs" should be reconsidered, and Japan should start the new way of dealing the problem This point will be same after the Law was revised.

7. The revision did not follow the revision condition of the present Organ Transplantation Law.
The present Organ Transplantation Law states that "to consider the operational situation of the Law, and to examine its overall situation" is the major premise of revising the Law (Supplementary Provision Article 2). However, there are some questionable cases of legal or guidelines violation among 81 cases of brain dead determination and organs taking out. The House of Representatives adopted the revision without thoroughly examine and study this point. In addition to that, because Proposal A does not require "the patient's own consent" to donate organs, the revision ignores the fundamental principle of the current law. And, it can be said that it regulates "human death" by law, first time in the legal history of Japan. It seems the Proposal A "established a new law" under the name of "revision". We can say it's deceiving the Nations.


To begin with, the life or death issue of human beings should not be decided by majority voting or replaced with legal issues. We believe the revision with proposal A will cause serious problems in ethical, legal, political, and social fields. To show just one example, the promoter of the proposal A stated in the Diet that "even patients are determined as legal brain dead, they can continue medical treatment under the coverage of health insurance if they refuse donating organs". The Supplementary Provision Article 11 of the current law states that the health insurance covers medical treatment "for some time". We strongly demand that promoters of proposal A and the Diet keep the promise of previous statement, not only "for some time" but eternally. When the health insurance is terminated, and the artificial ventilator is taken off, the brain dead patients die and are separated from their families.

Joint Signatures of "Emergency Statement of Bioethics Conference" (71 signatures)


 
 
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■2009/07/13
July 13, 2009
[Opposition Statement] Against establishment of the Proposal A revision of Organ Transplantation Law
The National Alliance of Disabled People against "Maternity Medical Supplement System" based on Eugenic Concept (優生思想に基づく「産科医 療補償制度」に抗議する障害当事者全国連合)


On Monday, July 13, 2009, the "Revision Proposal A" of the Organ Transplantation Law was established, in spite of our strong opposition to our survival. This revised law will be enforced in one year.

The major problems of this Revision Proposal A are; it define all brain death as human death, and it allow donation from brain dead people without the patient's consent as long as family agree with it.

Many of our members live with artificial ventilators under the chronic coma. In America, some people promote to take out organs when brain become malfunction (脳不全), by changing the definition of brain death, in order to make more organs available.

We are afraid Japan is moving ahead to legalize dignified death at the stage of brain death, by defining brain death as human death this time. The idea of "cutting off weak ones" to reduce medical cost must be there in this background. Efficiency is pushed to the level of "life".

We do not oppose organ transplantation. We fear the movement promoting efficiency first.

We will continue monitoring the right of people who could not declare their will because of intellectual or mental disabilities when the revised law become effective.

We restate our strong opposition against the revision A adopted in the House of Councilors. And we will strengthen our fight against eugenic concept from now on.

 
 
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■2009/07/27
Brain death and brain death of children (NHK Opinions "The problems of Organ Transplantation Law (3)")
MORIOKA Masahiro (森岡正博)

  The natural right to grow up and die as a while (2)
  http://www.lifestudies.org/jp/marugoto.htm
  Life Study Thinking on the Organ Transplantation Law revision
  http://www.lifestudies.org/jp/ishokuho.htm

Hello, everyone.

The National Diet revised the Organ Transplantation Law.

In case of adult patients, doctors can determine brain death and take organs out if their family agree, even if they don't have donor card.
In case of young children, doctors can determine brain death and take organs out only if their parents say yes, because children cannot declare their will.

Parents decide the fate of brain dead children.

Today, I'd like to tell you about brain dead children in detail.

People have said "brain dead people stop their heart beating in several days to one week, so brain death is same as human death".
However, recent studies exposed that some brain dead people, especially brain dead "children" can keep their heart beating for several months to one year, or for more than several years.
This is called "long-term brain dead".
Long-term brain dead children keep growing up. They become talker, get more matured face, and replace their teeth.

Some people say "long-term brain dead" children do not exactly meet the standard of brain death, so they are not real brain death.
Is it really true?

Please look at this slid. (Slides made with reference quoted below).
This is a paper called "Standard of brain death determination for children", published in the Journal of Japan Medical Association.
This is the only standard of brain death determination for children in Japan.
The paper says:
There were 20 cases that no-breath was confirmed, after strictly conducting no-breath test for more than two times to suspected brain dead children under the age of six.

Please look at the next slid.
Out of 20 brain dead children, seven kept their heart beating more than 30 days.
It accounts for 35%.
More surprisingly, four kept their heart beating more than 100 days.
That accounts for 20%.
We need to remember the fact that about 20% of brain dead people keep their heart beating more than 100 days in case of children.

Please look at the next slid.
This is a paper published in the Journal of Japanese Association for Acute Medicine.
A 11-month-old boy received the strict brain death determination including no-breath test and diagnosed as brain dead in Hyogo College Of Medicine. This boy kept his heart beating for 326 days after that. About one year!
Not only that. The boy grew from 74 cm tall to 82 cm tall while he stayed brain dead. He grew up when he was brain dead.

Please look at the next slid.
This boy began moving his arms and legs after 90 days, and "it looked as if he was dancing" the paper says.
He kept moving his arms and legs for more than 200 days until his heart finally stopped.
These movements gave mental shock to his parents, the paper says.
I'll say it again. This boy was determined as brain death with the strict and exact method.

Everybody, let's think about it.
Transplanting heart from a brain dead child means, cutting up the body which is warm, circulate blood, excrete, grow bigger and can move arms and legs, and taking out the heart which is still beating.
Heart transplantation from brain dead children is this; cutting out a beating heart from warm body.

There is no way to decide how long their heart keep beating after children are determined as brain dead.
If doctors take out organs from your child, then your child soon become cold, dead body.
However, if you leave your child untouched, your child might keep growing up for about a year.

Please imagine that your child is determined as brain death.
New law ask parents to decide it all.
"What does my child silently want most?"
"What is the body of my child trying to tell me by keep growing up?"

It is difficult to say "NO" in Japanese society.
Everybody, please remember that you can refuse the brain death examination, or can refuse to donate organs.
The right to say "NO" is protected by new law.

We have the "freedom to waver" when our child is diagnosed as brain dead in front of us.
It is natural that the parents "waver" with your brain dead child still warm and still trying to grow.
We have the "freedom to waver"
In the end, you can say NO to transplantation. There is nothing to be ashamed of.
The right to say no is protected by new law.

Now, I'd like to talk my personal philosophy and idea. I hope it can give you some hints.

Many people forget to think about brain dead young children when they discuss about organ transplantation.
They are born, but become brain dead because of accidents or illness. Then, their organs are taken out without their knowing.
I feel pity for them.

All children have the "natural right" to grow as a whole and die as a whole, keeping totality of their body, without being invaded from outside like organ transplantation.

They can deny that "natural right" only when they themselves "declared their will" to abandon that right.
We have to protect that "natural right", from the intervention of parents, too.
The lives of children are children's. They are not possessions of their parents'.

ISHIKAWA Takuboku wrote this poetry about the death of his child.
"My child was born and my child died, when snow-white radishes are took out from the soil".
I believe this poem moves us because dying child goes back to the Great Nature as it was born, without being disturbed by the parents.
It's because the baby is going back to the Great Nature, as a whole, like a snow-white radish just took out from the soil.

The media reports this and that about organ transplantation.

However, under that noise, some small children have become brain dead, but still are trying to live and grow.

Brain dead children cannot decide to have donor cards because they are too young. They cannot speak. Only grown-ups around the children can sense their existence and their lives, so they should do so for the children.

I think we are now tested, wether we can listen to that tiny voice or not.

(end)

 
 
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■2009/07/31
Article on revision of Organ Transplantation Law
TANAKA Tomohiko (田中智彦) Associate Professor, Tokyo Medical & Dental University

Women's Action Network, Opinions, July 31, 2009
http://wan.or.jp/modules/articles0/index.php?page=article&storyid=62

The revised Organ Transplantation Law (Proposal A) was adopted and established in July 13, 2009. This law defines all "brain death" as "human death" (although within the framework of the law), and allows to take organs out only with family's consent (parents' in case of children). While this revision was discussed, I have been active as a member of "Bioethics Conference" (http://seimeirinrikaigi.blogspot.com/), I believe this is not the end, and should not be end. I'd like to summarize the argument, and hope it will contribute for the continuing discussion.

Since the lawmakers began discussing the revision, only the proposal A can solve the "shortage of organs". Most of the media also reported so. However, "shortage of organs" is caused by "shortage of brain dead patients", so we need to increase the number of brain dead patients to "solve the shortage of organs". Most of brain dead patients are victims of traffic accidents, or patients of cerebral accidents. Therefore, as we reduce traffic accidents, or as we reform and establish better emergency medical service, the number of brain dead patients is expected to reduce as well.

In fact, in Belgium, one of the "advance country of organ transplantation", 10 years ago, as the result of government's effort to avoid traffic accidents, organ donations also reduced, so they had to consider using available organs from crime victims (Asahi Shimbun March 17, 1999). I suppose everybody in Japan hope to reduce the death toll of traffic accidents, which now exceeds 5,000 per year, or hope to have better emergency medical services, which is now "brink of collapse". It should be one of important duties of the Nation and the Government, too. When the Nation and the Government work for this duty, then the number of brain death and donors will reduce as well. How much of this contradictory problem of organ transplantation did the lawmakers and media considered seriously?

This contradiction also suggest that Japan has fewer donors not because "Japanese people are unkind" as it has been pointed out by some of bioethics academics and told in public. For example, about 40,000 people die in traffic accidents in the USA, and only rich people can receive satisfactory emergency service because of insurance system. Many people are killed by guns, too. Then, we can say Japan has had fewer donors, not because we lack "ethics", nor political neglect, but because Japan is much safer country than the USA. Even in the USA, "shortage of organs" still remains.

This criticism often face a counter-attack of "so you let Japanese children die waiting for organs". This question sounds sympathetic, but it is extremely cruel. Very few understand this is same as threatening others to die.

Organs for transplantation are taken out of other children who become brain dead situation. It is said specially difficult to determine brain death for children, but there are other problems. In case of so-called "long-term brain dead" children, they keep beating their heart and continue breathing, although with artificial ventilators. If you hold them, they are warm. They sweat, they excrete, they move their bodies and they grow up. A certain mother of "long-term brain dead" child said "my child just changed the form of living". If you see such child, many of you also would agree. It applies not only to children. Our wife or husband or parents can "change the form of living" because of traffic accidents or brain accidents.

However, now we will be forced to see our child or wife or husband or parents as "just dead bodies", connected to artificial ventilators. Then, all of us will be asked to donate organs of our loved ones. Such question was asked only when they had "donor card". Western countries have already established manuals to make families agree to donate organs, as a part of "mental care". I suppose you must be very arrogant or slow to be able to give "grief care" at the bedside of brain dead patients. Such care -- if you could call it "care" -- is said to be for family, but actually to persuade them to donate organs.

The "agreement" is not only to agree they are dead, when your children or wife or husband or parents silently hope at least YOU would disagree with doctors' diagnosis. It is to "agree" to have their bodies get anesthesia and muscle relaxants, cut up with knives, and cut their still beating heart. Later, when you see your children or wife or husband or parents again, cold and without organs, what would you feel? Maybe you try to convince yourself that you gave "death" instead of "life" to your loved ones, but still did "something good". But "something good" for whome?

There is no scientific foundation to make "brain death = human death". The logic saying "the heart of brain dead person eventually stops, therefore, it is human death" has been already broken, by "long-term brain dead" children. Also, "solving shortage of organs" by increasing brain dead people will be impossible as we have seen above -- unless the governments abandon their most important duties. Nevertheless, people keep saying "more organs" from both adults and children. In fact, those people are this: brain dead people have no "personality", so they are not worth living anymore. At least, they should donate their useful organs to other people who have "personality". That means, the revised law will result, not to "solve the shortage of organs" which is impossible, but to "discriminate lives" by deciding who is worth living and who is not, discriminating "those people who cannot feel or think properly are not worth living".

Life of each person supports making the society together. The life of brain dead person is the weakest. Now that life is about to be sort out. Because it is the weakest life, very few people consider the issue as their own. However, once we allow it to happen, then "sorting of life" will be expanded to comatose or terminal phase patients, and then to mentally disabled people or dementia people. In near future, such people can be forced to "death" under the name of "dignified death" for example. It won't be strange. You might say the families would not allow such things. But if the health insurance is terminated, most of us can do nothing else. And, remember, brain dead people and their families are now pushed to the verge already.

Of course, the urge of waiting patients and their families are serious. Who caused the "shortage of organs" to begin with? Is it the fault of brain dead patients and their families? If people are to be blamed to "live" after suffering traffic accidents and cerebral accidents, that means, our society is becoming the society that weak people blame weaker ones, and the weakest people are pushed to death in indifference and lack of understanding. In such society, we will soon loose the meaning of words like "venerableness of life", or sympathetic mind to appreciate your loved ones are alive, just alive but still alive.

To begin with, human life and death issue should not be voted or switched to legal problems. However, how many of the lawmakers had enough "insight" and "dignity" to speak out that they should not vote on revision to begin with. When we view the problem from this angle, we have established the precedent that the Diet has the power to "give death" to somebody by voting. It must be more serious problem than the poor and quick discussion before adopting the revision.

This is the situation to be described as "barbarism of democracy", using the words of French philosopher Comte-Sponville. Remember, Japan is a democratic country (at least), so that "barbarism" would not been invited unless we ourselves agree and vote for it. We are responsible for this situation. Nobody else.

The Public Peace Preservation Act was established in the middle of Taisho Democracy. KATO Shuichi called it "time bomb". This time, the law might invade our "life" and chase us to "death", more subtle yet more certain way. Would you say it's a groundless fear? History repeats itself. History teaches us repeatedly; someday, you will regret it, thinking "nice, old days when we could think it was a groundless fear".

In order to resist "barbarism of democracy", and to realize the society that anybody will be unconditionally acknowledged to be born and to be alive, we should resume thorough discussion and examination on brain death and organ transplantation from today, not waiting the enforcement of the revised law in a year.

 
 
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■2009/08/28
[Remonstrance] On the revision of Organ Transplantation Law
Japan National Group of Mentally Disabled People (全国「精神病」者集 団)


The Diet adopted the revision of Organ Transplantation Law in July 13, 2009. We, the Japan National Group of Mentally Disabled People, strongly oppose this revision, and here states the petition of remonstrance.

This revision sort lives to valuable and valueless, and force "valueless life" to donate organs to "valuable life". When people think of "valueless lives", most of the times they mean "lives which have not much use to survive" like "mentally disabled people" like us. Mentally disabled people like us have been killed for decades. Now, our lives are to be taken away by law for "valuable lives" to survive.

Family relations with mentally disabled people tend to have problems. Family panics when one of their members is labeled as "mentally disabled". They say "there is no crazy people in our family", and even couples tend to break up. With this situation as the background, many families agree to donate organs of "mentally disabled" members almost as a matter of fact, if there is a law to allow it. The Law says organs will not be taken out if the patient refuse it beforehand. However, it is difficult when the patients' legal capability is limited.

When the Law regulate human life, that means the Nation regulate the lives of its citizens. If human lives are commission to the government, they can be used for politically. The government prefer to reduce the number of disabled people or elder people.

This clearly is the Law to sort human life based on eugenic concept.

We refuse the Government continue killing us.

August 28, 2009

Japan National Group of Mentally Disabled People (全国「精神病」者集団)
c/o Kizunasha 2-39-3 Chuo, Nakano-ku
Tokyo 164-0011 Japan
http://www.jngmdp.org/e/

*This file is made as a part of the Global COE Program Ars Vivendi (Re. Program: I)

UP:May 6, 2010 REV:May 7, 2010/May 10, 2010
The Japanese version of this page is made by OTANI Izumi
Translated by HIRAGA Midori
Organ Transplantation / Brain Death
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