Opinion
Will genetic testing become the basis for a new caste system?
LETTER — Posted May 10, 2004
Regarding "Protecting genetic privacy" (Article, April 5): Your interview with Francis Collins, MD, PhD, was quite thought-provoking. I certainly agree with Dr. Collins that we need to protect our "genetic privacy," and that HIPAA and the Americans With Disabilities Act will not provide that protection. Further, there is consistent and overwhelming public support for limiting access to such information, especially when such data might be used by insurers or employers to discriminate.
However, most information an insurer needs to rate life or health insurance is already available through routine testing, medical and family history: Genetic testing will add little in most cases. In addition, I am not convinced that genetic testing is either distinct or exceptional, at least as such testing applies to risk determination or genetic discrimination. It is important to develop a comprehensive policy on the use and abuse of medical information, of which genetic information is but one sub-type.
We misconstrue the importance of our "genetic code" by making the assumption that it alone determines our destiny. It is but the skeleton of who we are or will be. However, I am concerned that genetic information will be (wrongly) treated as if it is determinative, and used to discriminate in society at large.
My concern is that we will increasingly define a person by his or her genetic information, creating a socially acceptable "caste system." For example, since a medical license is a privilege and not a right, why not add a "Genetic Disease Index (GDI)" to the criteria for admission to medical school, to assure that we graduate only healthy physicians? Or limit admission to law school to persons not genetically predisposed to alcohol abuse?
Finally, with the suggestion in the recent genetics literature that violent antisocial behavior is highly associated with certain genetic patterns (when combined with childhood abuse), should we even wait until someone commits a crime before isolating them from normal society? Or should we at least increase a criminal sentence based on a genetic pattern, as we now do with multiple offense convictions?
The potential abuse of genetic information has raised many more issues than mere insurance or employment discrimination. I strongly agree with the answer Dr. Collins gave to the question "Would you have any qualms about undergoing genetic testing in the current environment? His answer: "Yes, I would." Until we decide to protect such information against broad social abuse, genetic testing is not "safe."
Curtis E. Harris, MD, Ada, Okla.
Note: This item originally appeared at http://www.ama-assn.org/amednews/2004/05/10/edlt0510.htm.