APRIL 30, 2008

Please Don’t Hold My Deoxyribonucleic Acid Against Me

Ryan wrote last week about a fictional (but plausible) scenario where Internet users could enjoy the benefits of a personal Google Health Advisor. While the scenario sounds intriguing - and even beneficial - I’m a bit more skeptical.

Yesterday, I read on Ars Technica that the Senate passed a bill last week barring employers and insurance providers from considering genetic test results when hiring or or making coverage decisions. This is the downside to one’s genetic blueprint being easily accessible. Aside from lack of privacy, there’s also room for error. From the post:

Combined, the complexities and potential for error limit the informational value of most genetic tests. Any proper use of this information will require both care in interpreting cutting edge scientific information and care in performing the genetic tests, including retesting for confirmation. Are employers or insurance companies up for the expense involved in the level of care necessary to make personalized genetic decisions? This seems improbable.  Even if they do, the picture generated by our current level of genetic knowledge would be, at best, incomplete.

Worse yet, the very concept threatens to undermine another of the greatest potential benefits of the genome: personalized medicine. The goal of personalized medicine is to tailor treatments to a the unique genetic defects that have helped foster a disease, be it diabetes or cancer. But, if insurers can deny coverage based on those same genetic traits, the patient may never see the treatment.

There are a whole host of other reasons to be leery of decisions based on genetic factors, including the fact that some factors are more prevalent within some ethnic groups, raising the specter that genetics may serve as a rationale for some forms of racism. But the most powerful argument is that any genetic policies will be extremely difficult to do well and, even if done properly, could still get things wrong. Combine that with the potential for genetic-based decision making to inhibit the use of our new-found knowledge, and there is a potential for harm that could arise from policies such as the ones that may soon be outlawed.

New technologies can help us or hurt us, but if we rush into them, it’s hard to see the risks before they’re on top of us. Maybe it’s just my take on things, but I prefer to take a slightly more cautious approach.