Rhode Islanders’ attitudes towards the development of a statewide genetic biobank

Author:

Goldman Roberta E1,Kingdon Caroline2,Wasser Jared3,Clark Melissa A4,Goldberg Robert5,Papandonatos George D6,Hawrot Edward2,Koren Gideon3

Affiliation:

1. Warren Alpert Medical School of Brown University, Department of Family Medicine and Center for Primary Care and Prevention, Memorial Hospital of Rhode Island, CPCP, 111 Brewster Street, Pawtucket, RI 02906, USA.

2. Brown University, Department of Molecular Pharmacology, Physiology and Biotechnology, Providence, RI 02912, USA

3. Warren Alpert Medical School of Brown University, Cardiovascular Research Center, Division of Cardiology, Department of Medicine, Rhode Island Hospital, Providence, RI 02903, USA

4. Warren Alpert Medical School of Brown University, Department of Community Health and Program in Public Health, Providence, RI 02912, USA

5. University of Massachusetts Medical School, Worcester, MA 01655, USA

6. Brown University, Center for Statistical Sciences, Providence, RI 02912, USA

Abstract

Aims: To explore the attitudes of a voluntary subset of Rhode Island residents towards the potential development of a large, prospective, population-based study of sudden cardiac arrest, which will include a biobank to store blood for future biochemical and molecular analyses. Methods: A mailed survey and focus groups. Results: Survey respondents and focus group participants indicated willingness to provide biospecimens, medical history and personal lifestyle information, and to undergo medical tests. Both datasets included multiple concerns regarding long-term storage of biospecimens and personal information, and the need of potential biobank participants for detailed information regarding study protocols and oversight. Conclusion: A biobank has high potential for successful participant recruitment in Rhode Island if preceded by preparatory steps of public engagement and transparent mechanisms of addressing the population’s concerns and questions.

Publisher

Future Medicine Ltd

Subject

Pharmacology,Molecular Medicine,General Medicine

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