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This could be an inconvenient truth for DNA donors: the privacy of their genetic information might be at risk.
The journal Science, as well as many other major news outlets reported last week about privacy loopholes in one particular genetic database. A team of scientists managed to identity nearly 50 DNA donors of the 1000 Genome Project by cross-referencing their genetic markers with publicly accessible demographic databases, such as genealogy records and obituaries.
The privacy loopholes were found and reported by a group of researchers that was led by Yaniv Erlich, a human geneticist at the Whitehead Institute for Biomedical Research in Cambridge. Ehrlich’s team demonstrated how male participants of the 1000 Genomes Project can be identified by cross-referencing their specific genetic markers with publicly accessible data found in genealogy records. The participant’s genetic material was stored in the database in de-identified form. Using a custom-created computer algorithm, the researchers were able to link the data from different sources together and identify donors through public websites and family trees. The team published their results in Science, but not before they informed the National Institute of General Medical Sciences (NIGMS) and the journal about their results ahead of time. Moreover, the researchers did not release any of the names of individuals. In Ehrlich’s defense, the study was conducted in an effort to advance “vulnerability research”, meaning aimed at scrutinizing the security of genetic information – mission accomplished; but it also leads the way into a discussion around privacy and ultimately confidentiality.
Scrambling to avert a possible PR disaster and security risks, the NIGMS immediately removed some of the donor data from the public view. This might work as a quick fix; however, it won’t solve the problem in the long run. As major news outlets report about the study, critics and supporters of genetic privacy are coming forward in a debate that could influence the future of genetic information in the public domain.
Researchers are raising questions about the privacy of genetic information and the general public will demand answers. It is fair to say that the scientific community and public must respond to the genetic privacy issue in unison. It appears to me that we have two options to immediately address these ethical issues: 1) remove genetic data of study participants from the public domain altogether or 2) educate participants about the possible disclosure of their genetic information. My prediction is that after a long debate both approaches will be employed in the future.
While current polls suggest that the public support for providing genomic information is still big, inconvenient debates like these could shake the public trust in genomic science. And at this point I would like point out something very profound that I have observed lately: none of the articles I have read about this topic (10 so far) consult citizens about their opinion or fears. As a scholar and citizen I would like to see news outlets actually asking average people about their opinion. Granted that we need input and context from experts and academics, the media should include voices from their audience which are essentially the ones at risk here. Public debates around ethical issues in the biosciences can be described in normative models of science in the public, meaning ideal scenarios for communicating science to the public. Currently, we are observing very strong tendencies to showcasing experts and insiders which dominate the discussions in the media (a model that Gerhards and Schaefer (2009) refer to as the science-dominated public sphere). However, I argue that in cases like this, where the public is directly involved and affected, the media should choose to include more non-experts that come from the public that speak for and to the general citizen – an approach called the contextualized public sphere (Gerhards & Schaefer, 2009). Hence, we have to think about how to shape public debates about ethical issues in the mainstream media and I would encourage journalist to consult non-experts to contextualize the issues for citizens.
Aside from the issue of communicating these issues to the public, the scientific community will have to face difficult decisions. Gregory Ferenstein from TechCrunch suggests that ultimately we will have to choose between innovation and privacy. And although this debate might be painstakingly slow and get heated at times, it will have to happen with opinions on both sides. Critical voices highlight that this debates is essentially about the trade-off between privacy and medical breakthroughs, so we should have this discussion sooner than later. Participants of genetic studies might have to come to terms with the fact that scientists can no longer promise confidentiality, but the public might overcome that barrier and swallow the bitter pill.
The video below demonstrates how patients or study participants could maintain control over their genetic information. The presentation suggests that "DNA Guide" provides an interface that lets patients monitor and control access to their genetic information via real-time consent. As sophisticated as it looks, this solution also assumes a broad public understanding of genetic information and very tech-savvy user - both premises are arguably demanding.