title: Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health.
abstract: Biobanks raise challenges for developing ethically sound and practicable consent policies. Biobanks comprised of dried bloodspots (DBS) left over from newborn screening, maintained for long-term storage, and potential secondary research applications are no exception. Michigan has been a leader in transforming its DBS collection, marketing its biobank of de-identified samples for health research use. The Michigan BioTrust for Health includes approximately 4 million unconsented retrospective samples collected as early as 1984 and prospective samples added since the fall of 2010 with blanket parental consent. We engaged Michigan citizens to ascertain public attitudes, knowledge, and beliefs about the BioTrust and informed consent. A convenience sampling of 393 participants from communities around the state of Michigan (oversampling for minority populations) participated in meetings addressing newborn screening, the BioTrust and informed consent, yielding quantitative and qualitative survey and discussion data. Participants affirmed the principle of voluntary informed participation in research and advocated for greater public awareness of the existence of the BioTrust. Most expressed support for the use of DBS for research and a desire for greater involvement in granting permission for research use. Opinions varied as to which specific research uses were acceptable. Participants indicated a desire for greater engagement, public awareness, and more active decision making on the part of biobank participants and parents. Diversity of opinion over which research areas were deemed acceptable problematizes the blanket consent model that currently applies to the BioTrust's prospective DBS collection and that could become the new norm for research using de-identified data under proposed changes to the Common Rule.
authors.affiliation: University of Michigan School of Public Health Life Sciences and Society Program, Ann Arbor, MI, USA, dbthiel@umich.edu.
authors.forename: Daniel B
authors.initials: DB
authors.lastname: Thiel
authors.forename: Tevah
authors.initials: T
authors.lastname: Platt
authors.forename: Jodyn
authors.initials: J
authors.lastname: Platt
authors.forename: Susan B
authors.initials: SB
authors.lastname: King
authors.forename: Sharon L R
authors.initials: SL
authors.lastname: Kardia
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