Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: A population-based study

Abstract

The majority of the Swedish general public prefer general consent, and are thus willing to delegate some decisions to the RECs. However, preferences for information and consent procedures depend on the context, e.g. the risks for the donor and the purpose of the research. If feasible, procedures should be differentiated according to the preferences of individual donors, thus protecting the interests of both the minority and the majority.

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

“…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. 51,[54][55][56] The public and professionals, in general, agreed that a researcher has the obligation to disclose incidental findings; 47,50,52-54,57 however, Table 2 Data sharing/privacy protection in biobank-based genomic research: main findings Data sharing/privacy protection in biobank-based genomic research (a) Patients and the public had positive attitudes towards biobank-based genomic research and associated genomic data sharing and were mainly altruistically motivated to participate in research [24][25][26][27]29,[33][34][35][36][37][38]42 (b) Data sharing was recognized as a benefit by patients and the public 31,33,36,[40][41][42]49 (c) Patients, the public and professionals expressed privacy concerns focused on insurance, employment, 22,24,39,42,43,45 access to medical care and stigmatization 38,40,[42][43][44] (d) Benefit of data sharing for science and society outweighed potential risks; 40,43 concerns about privacy do not influence willingness to participate in biobank-based genomic research 38,…”

“…26,27 In contrast to patients, up to 44% of respondents from the public requested reconsent for each new study. [28][29][30] Furthermore, in one study with the public, 10% desired a possibility to decline research with their biological specimens in undesirable research fields. 30 These findings were supported by several other quantitative studies, which reported the public's desire to know the aim of research either as described in informed consent document or as approved by research ethics committee (REC).…”

“…Despite positive attitudes towards data sharing, [40][41][42]49 most respondents in quantitative as well as in qualitative studies stressed the importance of being informed about data-sharing practices and privacy protection measures during the informed consent process. 30,[39][40][41][42][43] In several studies, Table 1 Informed consent requirements in biobank-based genomic research: main findings Informed consent requirements in biobank-based genomic research (a) The majority of patients accepted one-time-general consent as appropriate type of consent; reconsent for every future research project was regarded as a waste of time, effort and money [22][23][24] (b) Up to 44% of respondents from the public requested reconsent for each new study [28][29][30] (c) Patients and public wanted to know the aim of the of research [25][26][27][30][31][32] (d) General requirements for participations in research were study approval by REC and trust in authorities 31,32 Articles excluded n=693…”

“…Informed consent requirements in biobank-based genomic research (a) The majority of patients accepted one-time-general consent as appropriate type of consent; reconsent for every future research project was regarded as a waste of time, effort and money [22][23][24] (b) Up to 44% of respondents from the public requested reconsent for each new study [28][29][30] (c) Patients and public wanted to know the aim of the of research [25][26][27][30][31][32] …”

The Ethics of Research Biobanking: A Critical Review of the Literature

“…Cancer patients are generally very supportive of research on their tissue (Malone et al, 2002;Pentz et al, 1999); potential participants in cohort studies are less willing but still relatively supportive (Cousins et al, 2005;Kettis-Lindblad et al, 2005;Kettis-Lindblad et al, 2007); while the kin of potential cadaveric donors are least likely to accept donation Womack et al, 2006). The more people feel they need medical research results; the more likely they seem to be to accept donations.…”