Journal of Community Genetics

, Volume 5, Issue 2, pp 125–138 | Cite as

Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health

  • Daniel B. Thiel
  • Tevah Platt
  • Jodyn Platt
  • Susan B. King
  • Sharon L. R. Kardia
Original Article
First Online:
Received:
Accepted:

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.

Keywords

Biobank Public health Informed consent Newborn screening Community engagement 
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Notes

Acknowledgments

This work was funded by an ARRA challenge grant issued through the National Human Genome Research Institute (5RC1HG005439-02). The authors gratefully acknowledge the community partner organizations, without whom this work would not have been possible, as follows: Community-based organization partners (Flint), The Asian Center (Grand Rapids), Arab Community Center for Economic and Social Services (Dearborn), Friends of Parkside (Detroit), Alliance Health (Jackson), InterTribal Council of Michigan, and Latino Family Services (Detroit). We would like to thank the participants who came to the community meetings for their time and input on this issue. We acknowledge the contributions of Nicole Fisher and Jamie Liebert who provided outstanding research assistance throughout the project. We also thank our colleagues at Michigan State University, Ann Mongoven, Meta Kreiner, and Andrea Sexton, with whom we developed the qualitative codebook used in this analysis. In addition, the authors acknowledge the work of Joan Scott, who served in an advisory capacity during the development and implementation of the community meetings. Additional support for this work was provided by a grant from the Eunice Kennedy Shriver National Institute for Child Health and Human Development (1R01HD067264).

Compliance with ethics

This study was conducted with oversight by the University of Michigan IRB and in compliance with current laws in the United States of America. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all participants for being included in the study.

Supplementary material

12687_2013_162_MOESM1_ESM.pdf (108 kb)
ESM 1 (PDF 108 kb)
12687_2013_162_MOESM2_ESM.pdf (399 kb)
ESM 2 (PDF 398 kb)

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Copyright information

© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  • Daniel B. Thiel
    • 1
    • 4
  • Tevah Platt
    • 1
  • Jodyn Platt
    • 1
    • 2
  • Susan B. King
    • 1
  • Sharon L. R. Kardia
    • 1
    • 3
  1. 1.University of Michigan School of Public Health Life Sciences and Society ProgramAnn ArborUSA
  2. 2.University of Michigan School of Public Health Department of Health Management and PolicyAnn ArborUSA
  3. 3.University of Michigan School of Public Health Department of EpidemiologyAnn ArborUSA
  4. 4.Life Sciences & Society ProgramUniversity of Michigan School of Public HealthAnn ArborUSA

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