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.