A guide to “Do You Know Where Your DNA Is?”

Welcome to the event blog for ”Do You Know Where Your DNA Is?” — a public forum on biomedical ethics hosted by the Northwest Association for Biomedical Research and CityClub Seattle on October 25, 2010.

The forum addressed issues of public trust and professional ethics in “biobanks” — large collections of biological samples and personal health information, also called “biorepositories.”

How should we govern biobanks? Can we trust them with our health information? How should donors provide consent? Will biobanks lead to medical progress?

These questions and others from the general public were addressed by our moderator, Gretchen Sorensen of Sorensen Ideas and three expert panelists:

• Kelly Edwards, PhD, Associate Professor, Department of Bioethics and Humanities at the University of Washington School of Medicine
• Shannon Sewards is Assistant Director for Operations, Human Subjects Division at the University of Washington
• Donna Russell, MHA is Director of Research Development and the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) at Seattle Children’s

Listen to or download recordings of the event (MP3): Part 1 | Part 2 or, see and read about the event below.

The most recent posts are listed at the top of this blog, so you might prefer to read up from the bottom:

• A guide to “Do You Know Where Your DNA Is?”
• Experts answer bioethics questions from the public
• How are biorepositories best governed?
• Science communications in the developing world
• Historical abuses and public trust
• Data collection and privacy
• The public as a full partner in science
• Will large biobanks lead to breakthroughs?
• Introducing our panelists
• From reactive to proactive health
• Do you know where your DNA is?

This blog was written by Brian Glanz for NWABR with photos by Jeffrey Luke for CityClub Seattle.

Do you know where your DNA is?

Did you know that the greater Seattle region is a hotbed for large collections of biological information and personal health information? Experts claim the collection and management of this data stands to benefit large scale medical research and could lead to exciting breakthroughs in medicine.

But collecting large banks of such personal information raises questions among experts and public alike: How are biorepositories best governed? Can I trust that my specimens and health information are secure? What are the minimal standards of donor consent for working with specimens and information? What other ethical and legal issues are there to think about? And to what extent is the promise of medical progress from biorepositories real?

I am writing today from the event itself, 25 October 2010 at CityClub Seattle and will publish a series of short posts over the next hour.

A photo of me at my laptop today:

Blog author Brian Glanz, with laptop.

— Brian Glanz for NWABR