Who Should Get The Benefits When You Donate Your DNA For Research?

from the tales-from-the-Blue-Zone dept

A few weeks back, we wrote about researchers calling for up to five years' exclusivity for clinical trial data derived from volunteers. That kind of information, typically derived from trials of a new drug, tends to be highly specific. But there's another kind which can potentially contain millions of valuable data points. In fact, the genetic information contained within every strand of DNA can not only provide important insights into countless diseases and medical conditions, but is the closest thing that exists to a digital summary of the person it comes from.

Because of that unique ability to store key data about people, collections of DNA have become a hugely important scientific resource. And because DNA is so intimately bound up with a single, identifiable individual, they naturally feel a very strong connection to that digital string and how it is used. Both of those traits are evident in this fascinating story from the Guardian about Sardinia's "Blue Zone" with its unexpectedly long-lived inhabitants: The story starts nearly 20 years ago when Gianni Pes, a Sardinian scientist at Sassari University, visited nearly all of Sardinia’s 377 municipalities to try to prove that certain areas had an unusually large number of people who lived extremely long lives. When they found a town that met their criteria, they marked it on their map with a blue marker. When they were done, the Sardinian Blue Zone was established. Naturally, scientists are keen to understand whether there is some genetic characteristic shared by these exceptional individuals: In all, four databases of DNA samples have been collected over the years, with some researchers refusing to collaborate with others. That hints at the deepening bitterness that has engulfed this area of research, as two groups claim the right to investigate one of the region's DNA databases: One of them was Shardna, created by a scientist called Mario Pirastu. Another entity, a partly publicly funded group called Parco Genetico, was established at the same time to facilitate the data collection and act as an intermediary between Shardna and the Blue Zone towns. Now the two groups both claim rights to the database. It's a complicated tale, with many murky corners, and it's worth reading the whole Guardian feature to follow its twists and turns as various companies go bankrupt, and the precious database containing blood samples from 13,000 Blue Zone inhabitants keeps changing hands. But as the Guardian rightly points out, the real issue is not which outfit should get to own the database, but the following: The conflict has raised the kind of thorny ethical questions that are likely to become more pervasive as scientists tap into the promise of massive DNA databases to learn more about disease. Should a private company be able to profit from the study of a population’s DNA, when the DNA was voluntarily donated? Needless to say, lawyers are now involved in resolving the more mundane issues of ownership of the Blue Zone blood samples. But even if a court hands down its judgment for this particular case, the larger ethical issues will remain, and become ever-more pressing as the importance and value of DNA databases continues to rise.

Follow me @glynmoody on Twitter or identi.ca, and +glynmoody on Google+

Thank you for reading this Techdirt post. With so many things competing for everyone’s attention these days, we really appreciate you giving us your time. We work hard every day to put quality content out there for our community. Techdirt is one of the few remaining truly independent media outlets. We do not have a giant corporation behind us, and we rely heavily on our community to support us, in an age when advertisers are increasingly uninterested in sponsoring small, independent sites — especially a site like ours that is unwilling to pull punches in its reporting and analysis. While other websites have resorted to paywalls, registration requirements, and increasingly annoying/intrusive advertising, we have always kept Techdirt open and available to anyone. But in order to continue doing so, we need your support. We offer a variety of ways for our readers to support us, from direct donations to special subscriptions and cool merchandise — and every little bit helps. Thank you.

–The Techdirt Team

Filed Under: dna, privatization, public good, research