In October, 1996 Ray Moseley, a professor of medical ethics in the Medical
Humanities Program at the University of Florida College of Medicine and the
principal investigator of the "Human Genome Insurance Project", and
his colleagues officially released their final report on genetic testing and
insurance. Entitled "The Ethical, Legal, and Social Implications of
Predictive Genetic Testing for Health, Life and Disability Insurance: Policy
Analysis and Recommendations", this 58 page document is probably the most
careful assessment to date of how the insurance industry is likely to be
affected by this technology. It is enriched by a series of balanced
recommendations that should be of considerable value to policy makers and
insurance executives alike.
The most important section of this crisp, easy to read report is chapter 3,
which presents 13 recommendations that are intended to provide a general ethical
framework that all insurers could use in developing their policies on the use of
genetic information. The core scaffold would require pre-test education
regarding medical and non-medical aspects of genetic tests, guarantees as to the
confidentiality of genetic information, written informed consent for testing,
and ensuring access to a reasonable level of health care for all U.S. residents.
A number of the recommendations are sure to be controversial. For example,
the report's suggestion that the scientific validity of genetic tests be
established through procedures developed by the American College of Medical
Genetics, which has strong support among geneticists, is sharply at odds with
the recommendations likely to be made by the Task Force on Genetic Testing
convened by the ELSI program of the National Center for Human Genome Research at
NIH. The current draft of the task force report strongly favors government
(FDA) validation of tests.
The Florida report also recommends that genetic samples only be stored with
the consent of the individual and that no additional tests be performed except
after securing a new consent. It opposes the use of blanket consent forms to
handle this issue. It suggests that samples be stored only in "governmentally
licensed facilites", and it recommends that genetic counseling by
adeqately trained professionals be required both before and after genetic
testing. Each of these recommendations is admirable, and costly.
The report is available at nominal cost. Contact the Medical Humanities
Program, Department of Community Health and Family Medicine, the University of
Florida College of Medicine. Dr. Mosely's phone number is 352-392-4321.
