DNA analysis raises personal privacy concerns

Amry Meltzer Guest Columnist

Nearly three decades ago, James Watson and Francis Crick proposed the structure of DNA, the genetic instructions for nearly all known life to date. In the intervening years, the scientific world has advanced considerably with regard to reading, constructing and manipulating DNA. The sheer power of the genetic code has been touted in each new arena it enters.

As we approach the end of the first decade of this millenium, individuals now have the ability to find out just what their own genes say about them. Most recently, the Web site 23andme (23andme.com) has begun offering personalized DNA analysis. For (just) $1,000, you can have your saliva analyzed by the site’s team, after which you are free to browse and see what about that 0.1 percent makes you so different from everyone else you’ve met.

Despite the entertainment provided by such services, sites such as 23andme or deCODEme (decodeme.com) that analyze personal DNA have come up against some serious opposition. Sure, I’d love to know whether my love for red meat has some genetic correlation, or to finally prove once and for all that it’s not my fault I can’t sing. But what happens when I discover I’m at a huge risk for Alzheimer’s disease, or that I’m very likely to suffer from early heart disease? Would I still want to know the intricacies of my DNA? More importantly, do I want my insurance company to know?

Thanks to the Health Insurance Portability and Accountability Act (HIPA) of 1996, insurance providers cannot deny coverage based upon genetic predispositions. They can still, however, considerably raise the cost of your insurance package if a test determines, for example, that you are at risk for heart failure. For most Americans (87 percent, according to a recent poll), this is an unsettling truth; insurance is already difficult enough to obtain without having to pay extra for each anomaly within your genetic code. HIPA also banned employers from practicing medical underwriting—using your medical history as a basis for insurance coverage. President Clinton issued an executive order in 2000 which prohibited medical underwriting for federal employees, and combined with HIPA, this theoretically protects over 200 million Americans from genetic discrimination.

Those who either do not have insurance, or receive it through a private firm, may be at risk for genetic discrimination. Employers traditionally haven’t looked at medical records, especially genetic tests, but as technology has improved, our ability to discern the ever-present “flaws” within each individual’s genes has advanced as well.

Given the choice between two equally qualified candidates, what employer would pick the one that could incur a much higher insurance bill? There is simply no incentive not to look at someone’s predispositions if it could save you thousands of dollars in insurance money each year. In fact, once the price for genome testing falls and availability increases, there could be a serious push to start examining genetic profiles. To paraphrase GATTACA, a Hollywood film about this subject, “It’s illegal to discriminate, but no one takes the law seriously.”

A number of state laws to protect the privacy of individuals’ genetic profiles already exist. Forty-one states have passed legislation to regulate genetic discrimination, but these protections aren’t adequate. There needs to be further regulation; the federal government has to act preemptively to disrupt future inequities.

I’d like to think that the inherent beauty and impartiality of the science of DNA can transcend commercial purposes, but it is just not viable. Your genetic disease profile may have less of an effect on your occupational ability than gender or physical disability, but it allows for employers and insurers to derive a comprehensive formula and thus discriminate against you.

If discrimination based on gender or physical disability is already banned, why shouldn’t genetic profiling be illegal as well? The evolving nature of genetics dictates that a new regulatory structure be put into place.