LOCATION: SUNNYSIDE ROOM

In this session, presenters and participants addressed concerns, risks and problems with biobanks and research use of human tissues, and consider positive visions of them. How can we best explain why these issues are so important, and best take advantage of the recent publicity around them (for example, the best-selling Immortal Life of Henrietta Lacks, and the media coverage of the successful Havasupai lawsuit against unauthorized gene tests on blood samples members had provided to researchers)?

Questions discussed included:

• What are our key areas of concern; what questions do we believe need more consideration and debate; what are the highest priorities?
  • Informed consent: how, when, who, what kind, what counts?
  • What are the key risks to donors’ privacy (and to privacy of their family members), and how can these be minimized?
  • Property rights: who should “own,” control, and/or share profits resulting from biological specimens?
  • What special concerns arise in research using vulnerable populations, such as newborn babies, indigenous tribes, and other groups?
• How can we best articulate and explain the concerns, risks and problems with biobanks and research using biological specimens?  What are the best framings - e.g., “property” or “privacy?”
• What does it mean to address these issues from a perspective grounded in social justice, human rights and the public interest?
• Who (else) should be included in these conversations?
• What policy recommendations can be made?