Protecting genetic privacy: Is a law needed?

The rise of genetic testing gave birth to a new fear -- genetic discrimination. Research pioneer Francis Collins, MD, PhD, discusses the potential threat and legislation aimed at preventing it.

By Joel B. Finkelstein, AMNews staff. April 5, 2004.

Genetic testing can offer a glimpse into someone's future health and someday could hold the potential for better prevention and treatment regimens. But some physicians on the cutting edge of this scientific horizon worry that health insurers and employers could use the results of genetic tests to discriminate against patients and employees.

These worries resulted in Senate passage last year of legislation aimed at preventing the misuse of genetic information. Some lawmakers are pressing the House to vote on the measure this year.

In an interview with AMNews, Francis Collins, MD, PhD, director of the National Human Genome Research Institute, shared his views on genetic discrimination and the legislation that would prohibit it.

Question: Is genetic discrimination currently a problem and if so, how widespread is it?

Answer: Most people have not had a genetic test yet, so the opportunity for genetic discrimination has not occurred in most people's lives. Certainly, as genetic tests become more widespread, the real risk is going to go up. However, it is not difficult to identify cases in which discrimination has already occurred.

Probably the best known of those is the Burlington Northern-Santa Fe railroad case where employees were tested for a genetic predisposition to carpal tunnel syndrome without their knowledge, with the clear intent of trying to figure out a way to let employees go if they might be at some risk of collecting workman's comp. So there is a pretty drastic example of the kind of thing that we would really like to see avoided and which is the motivation for some kind of legislative solution.