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

Roberta E. Goldman, Caroline Kingdon, Jared Wasser, Melissa A. Clark, Robert Goldberg, George D. Papandonatos, Edward Hawrot, Gideon Koren

Research output: Contribution to journalArticlepeer-review

20 Scopus citations


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.

Original languageEnglish
Pages (from-to)339-359
Number of pages21
JournalPersonalized Medicine
Issue number4
StatePublished - 2008
Externally publishedYes


  • Biobank
  • Biospecimen storage
  • Genetic analysis
  • Mixed-methods feasibility study
  • Personalized medicine
  • Sudden cardiac arrest
  • Sudden cardiac death
  • Ventricular fibrillation


Dive into the research topics of 'Rhode Islanders' attitudes towards the development of a statewide genetic biobank'. Together they form a unique fingerprint.

Cite this