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:

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:

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

Introducing our panelists

Moderator Gretchen Sorensen introduces our panelists:

Kelly Edwards, PhD is Associate Professor, Department of Bioethics and Humanities at the University of Washington School of Medicine. Edwards is core faculty for the Institute for Public Health Genetics and the Critical Medical Humanities Research Cluster. For more, see her bio in the Department of Bioethics and Humanities.

Edwards describes the questions she helps others consider in her work as a bioethics consultant, often regarding biorepositories. Questions are sometimes  about recruitment and communications to potential recruits, such as “How should we handle consent?” Other questions surround data access, i.e. who has or should have access to data from the repository?

Shannon Sewards is Assistant Director for Operations, Human Subjects Division at the University of Washington. “What is ‘the human subjects division’ all about?” muses Sorensen, noting the intriguing name, before answering simply that it’s “anything that involves research on a person.” For further clarification we offer the following, from the division’s home page:

“Research involving human subjects must be reviewed and approved by an Institutional Review Board (IRB). At the UW, several IRB committees serve this function. The Human Subjects Division (HSD) provides administrative support and facilitates IRB review; assisting researchers throughout the process.”

Sewards describes that the role of IRBs is to be protective for the general public, while they can be a hindrance, relatively speaking for researchers.

Donna Russell, MHA is Director of Research Development and GAPPS at Seattle Children’s. GAPPS is the Global Alliance to Prevent Prematurity and Stillbirth, whose expanded mission includes maternal, newborn, and child health with a global scope.

Russell notes that GAPPS began because of the magnitude of the problem of pre-term birth, here in the U.S. and globally. 13 million pre-term births happen annually around the world, and 1 million of those are fatal. There are also 3 million still births.

That means there are more than ten times the number of still births as there are “SIDS” deaths. SIDS is relatively well publicized while still birth is not.

We still, fundamentally do not know what causes many of these deaths. The best strategy for solving the mystery is to link high quality specimens to descriptive data.

Therefore a cornerstone of GAPPS is their biorepository. They just started collecting data in the last year, after two years of preparation and addressing many of the issues we will discuss today.

A fundamental ethical question for GAPPS is that pregnant woman are a vulnerable population.

Photo by Jeffrey Luke for CityClub Seattle

Edwards, Russell, and Sewards are introduced by Sorensen

From reactive to proactive health

Our moderator is Gretchen Sorensen of Sorensen Ideas. Sorensen opens with a brief introduction: “There’s a revolution going on right now in biology and medicine, and Seattle is at the forefront of it,” citing examples not only in global health but in biomedicine generally.

The revolution is a shift from reactive to proactive in health and biomedical research. We are looking at genetics, the environment, and interactions between them and changing medicine for the future. Medicine is becoming more personal with increased understanding and accessibility of genomics. Patients and consumers are playing a key role, participating more in determining their own medical future.

Biobanks are more than libraries of flesh,” Sorensen declared, in response to some popular media descriptions of repositories. (CityClub blogger Sara Neppl clarified that Sorensen was quoting this Wired magazine article from June 2010 that referred to biobanks as “libraries of flesh.”)

Biobanks combine biological specimens of organs, blood, and so on with data about health and lifestyle. Combining all of this is very powerful but also requires that we proactively and comprehensively address issues of public trust and ethics in research. Today’s panel discussion is one more step in that effort.

Moderator Gretchen Sorensen introduces our topic:

Photo 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:

Photo by Jeffrey Luke for CityClub Seattle

Blog author Brian Glanz, with laptop.

— Brian Glanz for NWABR