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


Goldman, RE; Kingdon, C; Wasser, J; Clark, MA; Goldberg, R; Papandonatos, GD; Hawrot, E; Koren, G; (2008) Rhode Islanders' attitudes towards the development of a statewide genetic biobank. Personalized medicine, 5 (4). pp. 339-359. ISSN 1741-0541 DOI: https://doi.org/10.2217/17410541.5.4.339

Full text not available from this repository.

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.

Item Type: Article
Faculty and Department: Faculty of Infectious and Tropical Diseases > Dept of Clinical Research
URI: http://researchonline.lshtm.ac.uk/id/eprint/4398471

Statistics


Download activity - last 12 months
Downloads since deposit
0Downloads
27Hits
Accesses by country - last 12 months
Accesses by referrer - last 12 months
Impact and interest
Additional statistics for this record are available via IRStats2

Actions (login required)

Edit Item Edit Item