Researchers’ opinions towards the communication of results of biobank research: a survey study

Abstract

Eighty Dutch investigators (response 41%) involved in biobank research responded to a web-based survey addressing communication of results of biobank research to individual participants. Questions addressed their opinion towards an obligation to communicate results and related issues such as ownership of blood samples, privacy, therapeutic relationship, costs and implications for participants. Most researchers (74%) indicated that participants only have to be informed when results have implications for treatment or prevention. Researchers were generally not inclined to provide more feedback to patients as compared with healthy participants, nor were they inclined to provide feedback in return for participants' contribution to the biobank. Our results demonstrate major and significant differences in opinion about the feedback of individual results within the community of biobank researchers. INTRODUCTIONTo understand the interplay of genetic and non-genetic factors in the origin of multifactorial diseases, biobank initiatives have been launched worldwide. One of the greatest promises of research involving biobanks is that it will lead to individualized medicine. This optimism is counterbalanced by concerns about the ethical, legal and social implications of genomics research. One of the discussions relates to the obligation of biobank researchers to provide feedback to individual participants about research results in general, and individual genetic variations in particular. [1][2][3][4][5][6][7] Issues related to the communication of results comprise among other a lack of clarity about what may constitute research results (with discussions about validity, clinical significance and incidental findings versus expected research results); how to accommodate participant preferences in informed consent procedures; the risk of breaching confidentiality and/or fostering therapeutic misconception, that is, the blurring of the relevant distinction between research practice and clinical care; and how to ensure proper disclosure given the complexity of the information and the costs involved.Professionals involved in genetic research are key figures in this debate. However, only few studies addressed their opinion on this issue. [8][9][10][11] We surveyed researchers involved in biobanks to study their opinions towards an obligation to return research results to participants and related issues such as ownership of blood samples, privacy, therapeutic relation, costs and implications for participants.

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

“…33,50 Professionals shared the concerns about potential emotional and psychological harm to the patients in several quantitative and qualitative studies. 51,[53][54][55][56] Some felt that this could in turn lead to a loss of public trust in research institutions. 54 The most prominent concern of professionals was the complexity of the results, the uncertainty in their interpretation and concerns about the quality of information, including validity and clinical utility of genomic findings.…”

“…While the public considered it an obligation to inform about research findings even if the results were not unambiguous 57 , most professionals agreed on the researcher's duty to return 'life-threatening' findings as well as findings on preventable or treatable diseases. 53,58 Information about the return of incidental findings from genomic research during the informed consent process. Very few qualitative studies with professionals and the public addressed whether returning incidental findings should be discussed with the participant during the informed consent process.…”

Scientists’ perspectives on consent in the context of biobanking research

“…[9][10][11][12][13] The ethical and legal appropriateness of different consent models is one of the most divisive topics with the absence of a consensus among academic scholars, 6 research policies, 14 and public opinion data. 15 While the bulk of research studies focus on capturing the perceptions of the general public and patients on research ethics issues related to biobanking, [16][17][18] only a few have focused on understanding the views of scientists who may manage biobanks [19][20][21][22][23][24][25] and even fewer concentrate on scientists' perceptions of informed consent. 26,27 It is important to capture the opinions of scientists as they run biobanks and are the end users of biorepository samples and information and thus have first-hand knowledge on biobank functions.…”

Returning Results: Let's Be Honest!

“…Researchers feel that they have variable duties: in a recent study, most researchers (74%) indicated that participants have to be informed when results have implications for treatment or prevention (Meulenkamp et al, 2012). Within the context of pediatric biobanks, scholars regularly refer to children's right to an open future to restrict the return of results (Hens et al, 2011).…”