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Studies in Ethics, Law, and Technology

Editor-in-Chief: Cutter, Anthony Mark

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SCImago Journal Rank (SJR) 2015: 0.218
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1941-6008
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Public Perceptions and Biobanking: What Does the Research Really Say?

Christen Rachul
  • Health Law and Science Policy Group, University of Alberta
/ Amy McGuire
  • Center for Medical Ethics and Health Policy, Baylor College of Medicine
/ Timothy Caulfield
  • Health Law and Science Policy Group, University of Alberta
Published Online: 2012-10-03 | DOI: https://doi.org/10.1515/1941-6008.1177

Abstract

Collection, storage, and use of biological specimens and clinical data is a historically contentious practice, especially among certain populations. It is therefore believed that public perceptions and opinions should be considered in the exploration of ethical issues associated with biobanking. It is hoped that this research will both help to illuminate the nature and depth of the social issues and inform the development of policy responses. We collected original research articles that dealt with public perceptions of biobanking initiatives, including both quantitative and qualitative findings. The intent was to elucidate public opinion on persistent key issues, including willingness to participate, consent, incidental findings and return of results, privacy, withdrawal, and ownership and control of provided material. While a wide range of issues and perspectives were explored in the research articles, the focus of this review is on the above list of key issues. With few exceptions (e.g., return of results and withdrawal), what is disclosed by this review of survey work is a lack of consensus on key issues, especially in the context of the nature of consent required.

This article offers supplementary material which is provided at the end of the article.

Keywords: genomics; public engagment; consent; biobanks

About the article

Published Online: 2012-10-03



Citation Information: Studies in Ethics, Law, and Technology, ISSN (Online) 1941-6008, DOI: https://doi.org/10.1515/1941-6008.1177. Export Citation

Citing Articles

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[1]
Zubin Master
The American Journal of Bioethics, 2015, Volume 15, Number 9, Page 63
[2]
Jamie Bryant, Rob Sanson-Fisher, Elizabeth Fradgley, Timothy Regan, Breanne Hobden, and Stephen P. Ackland
BMC Cancer, 2015, Volume 15, Number 1
[3]
Kathryn L. Braun, JoAnn U. Tsark, Amy Powers, Kristen Croom, Robert Kim, Francine C. Gachupin, and Paul Morris
Biopreservation and Biobanking, 2014, Volume 12, Number 2, Page 106
[4]
Maile Tauali`i, Elise Leimomi Davis, Kathryn L. Braun, JoAnn Umilani Tsark, Ngiare Brown, Maui Hudson, and Wylie Burke
Journal of Cancer Education, 2014, Volume 29, Number 3, Page 570

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