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 data sharing and find that the benefit of research outweighs the potential risk of reidentification. However, they desire detailed information about the privacy protection measures. Regarding the return of incidental findings, the public and professionals focus on clinically actionable results, whereas patients are interested in receiving as much information as possible. For professionals, concrete guidelines that help managing the return of incidental findings should be warranted. For this it would be helpful addressing the different categories - actionable, untreatable and inheritable diseases - upfront with patients and public.

Figure 1

Flow diagram showing the study selection process and classification of identified full-text articles. A total of 837 articles were identified as potentially eligible in the initial search. After the screening of titles and abstracts and the removal of duplicates, 152 articles met the eligibility criteria and were selected for further analysis. The full-text review identified 40 empirical studies, 15 articles analyzing informed consent documents and 97 discussions/opinion papers. The empirical studies described different stakeholders' perspectives on biobank-based genomic research. Depending on the group that was interviewed, studies were subdivided into the following categories: ‘patients' (n=12), ‘professionals' (n=8), ‘public' (n=14), ‘patients/professionals' (n=1), ‘patients/public' (n=3) and ‘professionals/public' (n=2).