Opinion

DNA Snoops

  • January 27, 2009
  • By Gail Javitt and Kathy Hudson

About

In April 2008, the blogosphere was abuzz with news that someone was auctioning then-candidate Barack Obama's half-eaten breakfast on EBay, along with silverware purported to contain his DNA. This episode led some to speculate that the DNA of one or both of the presidential candidates would be surreptitiously analyzed and their genetic information broadcast before the election for all to examine.

Although this scenario did not take place during this election cycle, it is well within the realm of technological possibility. Every day, we shed millions of cells during ordinary activities -- licking an envelope, brushing our hair, blowing our nose. These cells may seem to be mere human detritus, but our biological trash in fact could be a gold mine for information prospectors looking for clues to our health or ancestry. And as an investigation in the latest issue of New Scientist magazine found, there already is a vibrant industry offering covert DNA tests to confirm infidelity and parentage.

We have reached this point through technological advances in laboratory genetic analysis, dramatically reduced costs for the analysis and an almost complete absence of rules governing the legal status of "abandoned DNA," whether it be what we leave behind on coffee cups, hairbrushes -- or breakfast plates.

Today, laboratories perform testing for more than 1,500 diseases and conditions, as well as to establish parentage, identify missing persons and criminal suspects, and to discover ancestral origins. In recent years, dozens of businesses have sprung up offering a subset of these tests directly to consumers. These tests, primarily offered over the Internet, range from those that claim to tell you if you are at increased risk for an illness such as diabetes, Alzheimer's or breast cancer; to predict whether your son or daughter will be good at soccer; or to answer the age-old question, "who's the daddy?"

Last year, drugstores began selling an over-the-counter paternity test kit that allows you (or your nosy mother-in-law) to swab your child's cheek, send the sample to a laboratory and find out whether those dimples really do come from Grandma Sarah, or from a different family.

As a society, we face myriad assaults on the privacy of personal information. We have begun to take steps, albeit inadequate ones, to protect ourselves. But, although we have come to accept the need for vigilance in document shredding, we have yet to confront the impossibility of DNA shredding and the challenge of protecting our genetic identities from the prying eyes of genetic voyeurs.

It is true that, thanks to the passage of the landmark Genetic Information Nondiscrimination Act last year, employers and health insurers now are precluded from using genetic information to make employment or health insurance decisions. Some state laws go beyond GINA and prohibit all nonconsensual genetic testing for health-related purposes. But employers and insurers are far from the only players who may desire to obtain and disclose our DNA, and the interest of these other parties probably will extend beyond our health information. Except for the restrictions on health insurers and employers, there are few federal safeguards against nonconsensual testing.

Some states prohibit individual consumers from directly ordering genetic tests. But in many states, not only may you order genetic tests for yourself, but anyone with a sample of your DNA and a credit card could do so as well. Nor do state or federal laws restrict what companies that sell directly to consumers do with the DNA you have provided them. Some firms disclose that they may store your sample and use it for research, while others do not provide any privacy policy and presumably may sell the samples, or information derived therefrom, to third parties. Only a few states prohibit explicitly surreptitious DNA collection and analysis and the disclosure of results. As New Scientist found, even these laws do not appear to have been enforced.

Which brings us back to our new president's filched food. The bidding for his breakfast soared into the thousands before the item was pulled off EBay. But had it gone through, it appears the sale would not have violated any laws nor, in most states, would the analysis of DNA from his knife or the disclosure of the test results have been prohibited.

What might we have learned? Perhaps nothing of consequence. But perhaps we would have discovered information about his health risks or his ancestry that he did not want known, or that he did not wish to know himself.

Though one might posit justifications for heightened disclosure of certain genetic information in the case of our commander in chief, there is no plausible justification for permitting it to be obtained by snatching his leftovers and selling them to the highest bidder.

As for the rest of us, who may be less vulnerable to the genetic paparazzi but nevertheless potentially subject to the curiosity of our family, friends or significant others, we should stake our claim to the DNA we shed before others do.

Gail Javitt is law and policy director and Kathy Hudson is executive director of the Pew- supported Genetics and Public Policy Center at Johns Hopkins University.

This op-ed DNA Snoops appeared on the Los Angeles Times' Web site.