Candidates' genes: A future scoop?
Future candidates running for the nation's highest offices could have a bit of their genetic material lifted off their sleeve in a rope line, or off the glass from which they quaffed a homely mug of brew for the cameras. And in no time at all, some of their most personal information could be made public.
But would it be information that American voters want, need or know how to interpret? Would releasing an analysis of one's genome become de rigueur for any serious candidate? Would the absence or presence of worrisome genetic markers become a political weapon?
Those intriguing questions are asked -- and left for the future to answer -- in an editorial in the New England Journal of Medicine released today. Boston University neurology and genetic medicine specialist Dr. Robert C. Green and attorney George J. Annas sketch a future political landscape that is as no-holds-barred as the most recent election, but where sequencing an individual's genome can be done with commercially available microarrays, and possibly cost less than a day of a top-flight political consultant's billing rate.
The result, they suggest, opens a world of ethical quandaries -- not least, whether a candidate's genetic information is fair game for the media, political opponents or voters to have or demand. The release of extensive medical records by the campaign of Republican presidential nominee Sen. John McCain, the call for more details to be released by the campaign of President-elect Barack Obama, and a mounting body of investigations into former presidents' health and fitness all suggest that the public (or at least the media) consider such medical details pertinent for voters, say the authors.
Future candidates, they suggest, may feel railroaded into providing the information as a means of reassuring voters of their fitness. Congress this year passed -- and President George W. Bush has signed -- the Genetic Information Non-Discrimination Act, making it illegal for employers or health insurers to discriminate on the basis of genetic screens. But if candidates for top offices are held to a different standard, Green and Annas warn that "genetic McCarthyism" could be the result.
"Genetic information is easy to misinterpret and easy to misrepresent," say the authors. For the foreseeable future, genome scans -- such as those that have been made public recently by a group of genetic entrepreneurs -- will flag some medical conditions that are unlikely to materialize, and miss others that are more probable. (A study published in the same issue of the New England Journal, for instance, notes that an exhaustive analysis of genetic mutations associated with higher rates of Type 2 diabetes is of little value in predicting an individual's risk of developing the metabolic disorder.)
If a candidate's genetic makeup becomes fair game, write Annas and Green, the public will have to contend with "the specter of genetic information that is wrong or misleading." And the steady discovery of gene markers linked to psychiatric disease is certain to stir lingering stigma against mental illness, if those markers are discovered in a candidate's DNA.
It's a concern not all genetics experts share. Kathy Hudson of the Genetics and Public Policy Institute at Johns Hopkins University, says that candidates are already under pressure to release medical information that may or may not be meaningful. "I don't see what the concern is about a candidate's voluntary disclosure of health information, whether it's genetic or not," Hudson says.
Hudson does, however, get riled up at the prospect that candidates -- or any famous person -- might become the quarry of what she calls "genetic paparazzi" -- those who would seek to swipe their genetic material for analysis and disclosure without approval from the hunted. (Imagine, for instance, what Britney Spears' genome scan might have been able to tell the public about her risk of, say, alcoholism or bipolar disorder.)
The NEJM editorial "is an excellent way to explore the problem, but the problem extends far beyond presidential candidates," says Hudson. "The time has come for us to seriously consider what legislation to prevent the unauthorized collection and analysis of genetic material would look like."
The NEJM authors stop short of that point. It may be tempting, they write, to pass a law making it illegal to scan the genome of any candidate for public office without his or her permission. But in the end, civility and scientific humility should probably rule the day, they propose.
"Restraint by the candidates, coupled with education of the public, will be a more reasonable approach as we enter a medical future based at least in part on personalized genomics," write Green and Annas.
-- Melissa Healy
