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

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.

Keywords: biobank; biospecimen storage; genetic analysis; mixed-methods feasibility study; personalized medicine; sudden cardiac arrest; sudden cardiac death; ventricular fibrillation.