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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
29 July 2011 Issue #17


The Advocacy-driven Biobank

Dr. Suzanne Vernon, Scientific Director of the CFIDS Association of America, presented on the SolveCFS BioBank at Genetic Alliance’s Annual Conference, Evolving Models of Biobank Governance workshop. This approach allows an organization to engage its members more effectively in research and amass a comprehensive data and sample collection to attract researchers. Additionally, the organization protects their participants’ interests and information by handling all participant consent and enrollment. Access to the collection is limited to researchers whose proposals are approved by an advisory committee. Dr. Vernon outlined the challenges CFIDS has encountered, citing the expense of a well-run biobank, and the difficulty of marketing to researchers. She emphasized the importance of anticipating costs, including sample collection, information gathering, administration and storage, to successfully budget for the biobank’s future. She also recommended that biobanks actively pursue research opportunities with biotech and pharmaceutical companies. Finally, she suggested using success stories to build trust and educate researchers about advocacy-driven biobanks within the greater scientific community.

Demystifying the IRB

The Evolving Models of Biobank Governance workshop also featured a discussion of ethics and models of good governance. University of Washington research scientist and IRB member Susan Brown Trinidad spoke about the difficulties researchers often encounter with IRBs, and ways to make the exchange easier on both parties. She provided a “cheat sheet” of what IRBs look for in proposals from researchers, as well as a specialized list for common IRB concerns surrounding biobank governance. Finally, she emphasized the importance of treating IRB members like partners and colleagues, rather than adversaries, by consulting with them frequently, and extending them the same courtesies as you would a collaborator.

View the recommendations.

Informed Consent and Biobanking

Dr. Christian Simon and colleagues at the University of Iowa examined preferences about informed consent in biobanking and recently published their findings, Active choice but not too active: Public perspectives on biobank consent models. The majority of participants thought that some kind of informed consent should be used when deriving and banking samples, and most preferred an opt-in consent process. Participants were also asked if they preferred a broad consent, a “menu-type” consent where they could control what research their samples and information are used in, or a study-specific consent where they would be contacted for their permission every time their samples and information became eligible for research. More people preferred broad consent than either the menu or study-specific type, however there was a significant number of people who preferred more control over sample use than offered by broad consent. Some experts have suggested that more than one type of consent should be offered to allow for diversity of preferences, despite the cost and logistical implications of such an approach. This study examined public opinion, and it is unknown if these results are representative of disease communities.

Read the release.

Share Your Advocacy Story

Genetic Alliance, in partnership with Family Voices and The Arc, launched an online questionnaire that allows experienced family advocates to share their advocacy journey, including how they developed certain skills and created opportunities to influence systems. The online questionnaire will close on Friday, August 19. Parents (biological, adoptive, or foster), siblings, grandparents, other relatives, caregivers, and those with a health condition or disability are all welcome to participate. We hope you will consider participating so other families may benefit from your story!

Upcoming Events

Genetic Alliance will host a Salon on August 18, 2011, in Seattle, WA. Our salons are a means of transformative visioning through conversation with others, and participants are chosen for their character and reputation as open-minded, curious individuals who are willing to explore all sides of an issue. The salon will focus on innovation and will ask the questions: In what areas do you think innovation is needed? How are you an innovator? What dreams do you have for better systems around you?

Genetic Alliance Registry Boot Camp will be held on August 19, 2011, in Seattle, WA. The interactive workshop will address best practices for working with advisors, questionnaire design, sample collection strategies, tools to assess registry vendors, a review of organizational operations and resources, strategies for good governance, and tips for recruitment and retention.

Join Genetic Alliance for our 25th Anniversary Celebration on September 22, 2011, in Washington, DC. Grammy award winner and health advocate Naomi Judd will be on hand to share her passion with us as we feature a museum-quality Innovators Exhibit that highlights innovation from the genetics, health, and advocacy community. Music, snacks, and drinks – not to mention great company – will keep the innovations coming throughout the night and beyond.


Edited by Liz Horn, Catherine Dokurno, Nina Grossman, and Sharon Terry.

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