From Suspects to the Spitterati: A collision of power, profit, and privacy
Posted by Jessica Cussins June 27, 2013
Biopolitical Times
DNA is the ultimate big-data dream. It can shed light on our health, ancestry, and family members. It can be used to solve crimes and exonerate the innocent, investigate diseases and treatments, advance basic scientific knowledge, and reveal certain aspects of our histories and potential futures.
But as genetic data is collected and used in increasingly varied contexts, issues of privacy, rights, access, justice, and innovation are poised to collide – and to intersect our lives in both positive and negative ways. The questions raised by this coming collision won’t be answered immediately, but we need to start now to tease out their complexities.
Many suitors are lining up to exploit the explosion of genetic information.
But as genetic data is collected and used in increasingly varied contexts, issues of privacy, rights, access, justice, and innovation are poised to collide – and to intersect our lives in both positive and negative ways. The questions raised by this coming collision won’t be answered immediately, but we need to start now to tease out their complexities.
Many suitors are lining up to exploit the explosion of genetic information.
- Local police agencies are creating their own databases – some call them “rogue” databases – and the Supreme Court recently determined that state and federal authorities can take DNA from people arrested (pre-conviction) for serious crimes.
- Companies are rushing to patent genetic findings, even when such claims are absurd (and now, at least partially, ruled unconstitutional by the Supreme Court).
- Marketing and advertising gurus are looking to genetic sequencing as the next frontier of precision-targeted consumer data.
- Developers are competing to create apps – many of dubious utility, and some potentially harmful – that will do everything from suggesting optimal nutrition for your genetic profile to offering good genetic matches as a dating service.
- An artist is picking up stray hairs and using them to create 3D portraits of the owner.
- Consumer genomics company 23andMe is now offering its genetic test for only $99 – knowing full well that the information you’re handing over is much more valuable than the information it’s giving you.
Each of these uses makes its own bevy of assumptions and raises its own array of ethical concerns. But certain themes resound: Who owns your genetic data? Who can access it? Who can profit from it? What does informed consent and privacy mean in different contexts? What control – if any – over your genetic information do you retain once it’s been collected? Who gets to and who is forced to have their genetic information profiled and stored?