On the Ethics of Testing for Genetic Risk Factors

Ed Uthman, MD

Diplomate, American Board of Pathology

24 Apr 1996

Recent advances in clinical molecular biology have allowed geneticists to identify certain genes that indicate high risk for the development of various diseases, including breast cancer. The immediate question that comes to mind is what role, if any, does the laboratory world play in the evolution of policies concerning the use of such genetic data by insurance companies for the purposes of screening applicants and rating them for premium schedules.

A few years ago, I watched helplessly as a lab I was working with got involved with pre-employment drug testing. It was clear to me that the industrial employers, who were the lab's clients for this service, did not have a clue about how to interpret positive results, nor were they aware of what kinds of drug abuse would not be detectable by the urine drug screens. There is no telling how many people were denied jobs based on misinterpretation of the scientific data by non-scientific clients, and no telling how many seriously impaired drug abusers were kept on the job through the companies' false sense of security.

It was my position then, as it is now, that those who have pledged their careers to helping the sick should not prostitute their talents by providing medical data for nonmedical purposes. I thought urine drug testing was bad enough, but to give insurance companies access to the results of genetic testing will be a nightmare. Not only does this defeat the whole purpose of insurance (the even distribution of risk), but it seems to gnaw at the very philosophical underpinnings of a free society, as in "all men are created equal."

The nature/nurture war is now over, and nature won it hands down. We now know that all men and women are created even more unequal than the pundits of Pre-Enlightenment Western civilization could have ever imagined, but we have generally tried to stay at least within the belief that "all men and women are created with no institutionalized impediments to equal achievement." If genetic data is used for any purpose other than 1) to help the patient, and 2) to bring criminal offenders to justice, then we will have marched right out of the philosophy upon which this democracy, and others modeled after it, were founded, and back into a dark age of predeterminism from birth.

I hope that the medical community in general, and the lab community in particular, will for once stand up and say no to the perversion of our own technology.