If one quote sums up the usefulness of PRIM&R’s annual Advancing Ethical Research (AER) Conference, I think it’s one I heard over the lunch table: “This is why you come to PRIM&R: to hear what’s coming up for the next year.”
And I know I already used that line, in my last Blog Squad post from the 2014 AER Conference, but it came back to me again this week. Not even two months have passed since the AER Conference, and the observation is already proving true. Just this month I have reflected on insights from the conference that illuminated events around us. Here are two articles, from both our specific realm of ethics and research and the general news services, which brought to mind some of PRIM&R’s most memorable sessions.
23andMe marketing its trove of genetic data: Since 2006, 23andMe has been offering genetic analysis and reports to customers for $99 each. Slate’s Future Tense blog recently discussed another aspect of 23andMe’s business: aggregating, anonymizing, and selling the genetic information it has collected. The blog immediately recalled for me highlights from PRIM&R’s pre-conference program, Contemporary Issues in Biobanking: Governance, Consent, and Practical Approaches to Current Challenges. At that pre-conference we heard firsthand about the ethical and research challenges that result when setting up biobanks.
The Future Tense blog indicated that 23andMe has no “institutional review mechanisms”, but a quick read of 23andMe’s consent and privacy documents suggests they do have some research participant protections in place.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.