Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.

ABSTRACT: The success of biobank-based genomic research is widely dependent on people's willingness to donate their tissue. Thus, stakeholders' opinions should be considered in the development of best practice guidelines for research and recruiting participants. We systematically analyzed the empirical literature describing different stakeholders' views towards ethical questions with regard to type of consent, data sharing and return of incidental findings. Patients are more open to one-time general consent than the public. Only a small proportion desires recontact if the research aim changed. A broad consent model would prevent only a small proportion of patients from participating in research. Although professionals are concerned about a risk of reidentification, patients and the public support da

SUBMITTER: Husedzinovic A 

PROVIDER: S-EPMC4795193 | biostudies-literature | 2015 Dec

REPOSITORIES: biostudies-literature