Dataset Information

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

ABSTRACT: Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered consent and controlled data sharing; broad consent and controlled data sharing; or broad consent and open data sharing. Of 82,328 eligible individuals, exactly 13,000 (15.8%) completed the survey. Overall, 66% (95% CI: 63%-69%) of population-weighted respondents stated they would be willing to participate in a biobank; willingness and attitudes did not differ between respondents in the three scenarios. Willingness to participate was associated with self-identified white race, higher educational attainment, lower religiosity, perceiving more research benefits, fewer concerns, and fewer information needs. Most (86%, CI: 84%-87%) participants would want to know what would happen if a researcher misused their health information; fewer (51%, CI: 47%-55%) would worry about their privacy. The concern that the use of broad consent and open data sharing could adversely affect participant recruitment is not supported by these findings. Addressing potential participants' concerns and information needs and building trust and relationships with communities may increase acceptance of broad consent and wide data sharing in biobank research.

SUBMITTER: Sanderson SC

PROVIDER: S-EPMC5339111 | biostudies-literature | 2017 Mar

REPOSITORIES: biostudies-literature

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Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

Sanderson Saskia C SC Brothers Kyle B KB Mercaldo Nathaniel D ND Clayton Ellen Wright EW Antommaria Armand H Matheny AHM Aufox Sharon A SA Brilliant Murray H MH Campos Diego D Carrell David S DS Connolly John J Conway Pat P Fullerton Stephanie M SM Garrison Nanibaa' A NA Horowitz Carol R CR Jarvik Gail P GP Kaufman David D Kitchner Terrie E TE Li Rongling R Ludman Evette J EJ McCarty Catherine A CA McCormick Jennifer B JB McManus Valerie D VD Myers Melanie F MF Scrol Aaron A Williams Janet L JL Shrubsole Martha J MJ Schildcrout Jonathan S JS Smith Maureen E ME Holm Ingrid A IA

American journal of human genetics 20170209 3

Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from ...[more]

PMID: 28190457

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Project description:ContextBiobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants' information is managed and shared. Three previous studies of the Canadian public's opinion about these topics have been conducted. Building on those results, an online survey representing the first study of public perceptions about biobanking spanning all Canadian provinces was conducted. Specifically, this study examined qualitative views about biobank objectives, governance structure, control and ownership of samples and data, benefit sharing, consent practices and data sharing norms, as well as additional questions and ethical concerns expressed by the public.ResultsOver half the respondents preferred to give a one-time general consent for the future sharing of their samples among researchers. Most expressed willingness for their data to be shared with the international scientific community rather than used by one or more Canadian institutions. Whereas more respondents indicated a preference for one-time general consent than any other model of consent, they constituted less than half of the total responses, revealing a lack of consensus among survey respondents regarding this question. Respondents identified biobank objectives, governance structure and accountability as the most important information to provide participants. Respondents' concerns about biobanking generally centred around the control and ownership of biological samples and data, especially with respect to potential misuse by insurers, the government and other third parties. Although almost half the respondents suggested that these should be managed by the researchers' institutions, results indicate that the public is interested in being well-informed about these projects and suggest the importance of increased involvement from participants. In conclusion, the study discusses the viability of several proposed models for informed consent, including e-governance, independent trustees and the use of exclusion clauses, in the context of these new findings about the views of the Canadian public.

Project description:BackgroundThe creation of biobanks depends upon people's willingness to donate their samples for research purposes and to agree to sample storage. Moreover, biobanks are a public good that requires active participation by all interested stakeholders at every stage of development. Therefore, knowing public's attitudes towards participation in a biobank and biobank management is important and deserves investigation.MethodA survey was conducted among family members of patients attending the outpatient department of our institute for a geriatric or neurological visit, documenting their willingness to participate in a biobank and their views on the legal-ethical aspects of biobank management. Information regarding subjects' attitudes on biomedical research in general and genetic research in particular was also collected. Participants' data on biobanks were compared with data previously collected from the Italian ethics committees (ECs) to evaluate the extent to which lay people and ethics committees share views and concerns regarding biobanks.ResultsOne hundred forty-five subjects took part in the survey. The willingness to give biological samples for the constitution of a biobank set up for research purposes was declared by 86% of subjects and was modulated by subjects' education. People in favour of providing biological samples for a biobank expressed a more positive view on biomedical research than did people who were not in favour; attitude towards genetic research in dementia was the strongest predictor of participation. Different from ECs that prefer specific consent (52%) and do not choose the option of broad consent (8%) for samples collection in a biobank, participants show a clear preference for broad consent (57%), followed by partially restricted consent (16%), specific consent (15%), and multi-layered consent (12%). Almost all of the subjects available to contribute to a biobank desire to receive both individual research results and research results of general value, while around fifty per cent of ECs require results communication.ConclusionFamily members showed willingness to participate in a biobank for research and expressed a view on the ethical aspects of a biobank management that differ on several issues from the Italian ECs' opinion. Laypersons' views should be taken into account in developing biobank regulations.

Project description:BACKGROUND:Internet interventions have been proposed to improve the accessibility and use of evidence-based psychological treatments. However, little is known about attitudes toward such treatments, which can be an important barrier to their use. OBJECTIVE:This study aimed to (1) determine attitudes toward guided internet interventions, (2) assess its acceptability compared with other internet-based formats, and (3) explore predictors of acceptance. METHODS:A convenience-sample Web-based survey (N=646) assessed attitudes toward guided internet therapies (ie, perceived usefulness and helpfulness, and advantage relative to face-to-face therapy), preferences for delivery modes (ie, e-preference: guided internet interventions, unguided internet interventions, or videoconferencing psychotherapy), and potential predictors of attitudes and preferences: sociodemographics, help-seeking-related variables, attachment style, and perceived stress. RESULTS:Although most participants perceived internet interventions as useful or helpful (426/646, 65.9%), a few indicated their advantage relative to face-to-face therapy (56/646, 8.7%). Most participants preferred guided internet interventions (252/646, 39.0%) over videoconferencing psychotherapy (147/646, 22.8%), unguided internet interventions (124/646, 19.2%), and not using internet interventions (121/646, 18.8%; missing data: 1/646, 0.2%). Attachment avoidance and stress were related to e-preference (all P<.05). Moreover, preference for therapist-guided internet interventions was higher for individuals who were aware of internet-based treatment (?26=12.8; P=.046). CONCLUSIONS:Participants assessed therapist-guided internet interventions as helpful, but not equivalent to face-to-face therapies. The vast majority (523/646, 81.0%) of the participants were potentially willing to use internet-based approaches. In lieu of providing patients with only one specific low-intensity treatment, implementation concepts should offer several options, including guided internet interventions, but not limited to them. Conversely, our results also indicate that efforts should focus on increasing public knowledge about internet interventions, including information about their effectiveness, to promote acceptance and uptake.

Project description:BackgroundDigital health research repositories propose sharing longitudinal streams of health records and personal sensing data between multiple projects and researchers. Motivated by the prospect of personalizing patient care (precision medicine), these initiatives demand broad public acceptance and large numbers of data contributors, both of which are challenging.ObjectiveThis study investigates public attitudes toward possibly contributing to digital health research repositories to identify factors for their acceptance and to inform future developments.MethodsA cross-sectional online survey was conducted from March 2020 to December 2020. Because of the funded project scope and a multicenter collaboration, study recruitment targeted young adults in Denmark and Brazil, allowing an analysis of the differences between 2 very contrasting national contexts. Through closed-ended questions, the survey examined participants' willingness to share different data types, data access preferences, reasons for concern, and motivations to contribute. The survey also collected information about participants' demographics, level of interest in health topics, previous participation in health research, awareness of examples of existing research data repositories, and current attitudes about digital health research repositories. Data analysis consisted of descriptive frequency measures and statistical inferences (bivariate associations and logistic regressions).ResultsThe sample comprises 1017 respondents living in Brazil (1017/1600, 63.56%) and 583 in Denmark (583/1600, 36.44%). The demographics do not differ substantially between participants of these countries. The majority is aged between 18 and 27 years (933/1600, 58.31%), is highly educated (992/1600, 62.00%), uses smartphones (1562/1600, 97.63%), and is in good health (1407/1600, 87.94%). The analysis shows a vast majority were very motivated by helping future patients (1366/1600, 85.38%) and researchers (1253/1600, 78.31%), yet very concerned about unethical projects (1219/1600, 76.19%), profit making without consent (1096/1600, 68.50%), and cyberattacks (1055/1600, 65.94%). Participants' willingness to share data is lower when sharing personal sensing data, such as the content of calls and texts (1206/1600, 75.38%), in contrast to more traditional health research information. Only 13.44% (215/1600) find it desirable to grant data access to private companies, and most would like to stay informed about which projects use their data (1334/1600, 83.38%) and control future data access (1181/1600, 73.81%). Findings indicate that favorable attitudes toward digital health research repositories are related to a personal interest in health topics (odds ratio [OR] 1.49, 95% CI 1.10-2.02; P=.01), previous participation in health research studies (OR 1.70, 95% CI 1.24-2.35; P=.001), and awareness of examples of research repositories (OR 2.78, 95% CI 1.83-4.38; P<.001).ConclusionsThis study reveals essential factors for acceptance and willingness to share personal data with digital health research repositories. Implications include the importance of being more transparent about the goals and beneficiaries of research projects using and re-using data from repositories, providing participants with greater autonomy for choosing who gets access to which parts of their data, and raising public awareness of the benefits of data sharing for research. In addition, future developments should engage with and reduce risks for those unwilling to participate.

Dataset Information

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

Publications

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

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