Los Angeles Times Op-Ed: Genetic testing has become a thriving, mostly unregulated industry that threatens our privacy
The Los Angeles Times has an interesting opinion piece on DNA data by Gail Javitt, law and policy director, and Kathy Hudson, executive director of the Pew-supported Genetics and Public Policy Center at Johns Hopkins University. The center also recently released an issue brief on surreptitious DNA testing. I have written previously about genetic data and the questions surrounding its collection and use, whether surreptitious or not.
From Javitt and Hudson’s piece:
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?” […]
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.