Your DNA is a set of bodily instructions, a catalog of our evolutionary past and a personal warning label about your health risks. It is also a secret. No one knows what your DNA says.
That’s a question looming larger in American life as genetic testing becomes a mainstream activity. Time named direct-to-consumer DNA exams its Invention of the Year for 2008, following the emergence of companies like 23andMe and Navigenics, which report on your genetic risk of illnesses such as prostate cancer or Parkinson’s. Academic medical research efforts like Harvard’s Personal Genome Project aim to study the DNA of volunteers, hoping to find genetic links to diseases. So do healthcare providers: In December, California-based Kaiser Permanente announced plans to study the DNA of 400,000 members.
The promise of these tests includes drugs that may someday be tailored to treat your illnesses. The peril is that your personal data could circulate more widely than you expect. DNA provides a rich digital source of medical information, which has great scientific value and lends itself to data sharing. But DNA testing currently involves a lightly regulated tangle of private and nonprofit researchers. Once you take a DNA test, it ceases to be your property. Your genetic data could circulate among insurers and employers, or even data brokers and pharmaceutical companies hoping to profit from it.
“Information can be harmful, and the risks great for individuals,” says Patrick Taylor, deputy general counsel at Children’s Hospital in Boston, who has written about genetic privacy. Those risks include the loss of a job or insurance — employers or insurers might not like your DNA profile — and the disclosure of medical secrets or the creation of family traumas. And with DNA, Taylor notes, “Once it’s out, it’s out.” You can change your credit card number, but you can’t apply for a new genetic code.