Effect of deliberation on the public's attitudes toward consent policies for biobank research.
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ABSTRACT:
SUBMITTER: Tomlinson T
PROVIDER: S-EPMC5838972 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectiveTo assess the informed, deliberative views of the older general public toward a policy of allowing surrogate consent for Alzheimer disease (AD) research.MethodsA total of 503 persons aged 50+ recruited by random digit dialing were randomly assigned to 1 of 3 groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after deliberation session (or equivalent time), and 1 month after the session, regarding their attitudes toward a policy of allowing surrogate consent for research studies of varying risks and potential benefits (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial).ResultsAt baseline, a policy of surrogate consent for AD research was supported by 55%-91%, depending on the scenario. The education group had a transient increase in support for one research scenario after receiving the information materials. In the deliberation group, support for surrogate consent was higher after deliberation for all scenarios (67% to 97%), with much of the increase sustained 1 month after the deliberation session. No changes occurred in the control group. The study's limitations include self-selection of participants due to the demanding nature of attendance at the deliberation sessions.ConclusionsThis sample of the older general public generally supported a policy of surrogate consent for AD research at baseline. Their support increased with democratic deliberation involving informed, in-depth exploration of the relevant scientific and ethical issues.
| S-EPMC3235352 | biostudies-literature
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.
| S-EPMC4258254 | biostudies-literature
Project description: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.
| S-EPMC5339111 | biostudies-literature
Project description:The increased use of genomic sequencing in clinical diagnostics and therapeutics makes imperative the development of guidelines and policies about how to handle secondary findings. For reasons both practical and ethical, the creation of these guidelines must take into consideration the informed opinions of the lay public. As part of a larger Clinical Sequencing Exploratory Research (CSER) consortium project, we organized a deliberative democracy (DD) session that engaged 66 participants in dialogue about the benefits and risks associated with the return of secondary findings from clinical genomic sequencing. Participants were educated about the scientific and ethical aspects of the disclosure of secondary findings by experts in medical genetics and bioethics, and then engaged in facilitated discussion of policy options for the disclosure of three types of secondary findings: 1) medically actionable results; 2) adult onset disorders found in children; and 3) carrier status. Participants' opinions were collected via surveys administered one month before, immediately following, and one month after the DD session. Post DD session, participants were significantly more willing to support policies that do not allow access to secondary findings related to adult onset conditions in children (Χ 2 (2, N = 62) = 13.300, p = 0.001) or carrier status (Χ 2 (2, N = 60) = 11.375, p = 0.003). After one month, the level of support for the policy denying access to secondary findings regarding adult-onset conditions remained significantly higher than the pre-DD level, although less than immediately post-DD (Χ 2 (1, N = 60) = 2.465, p = 0.041). Our findings suggest that education and deliberation enhance public appreciation of the scientific and ethical complexities of genome sequencing.
| S-EPMC5161735 | biostudies-literature
Project description:ObjectivesTo describe how members of the older general public deliberate with one another in finding solutions to the dilemma of involving persons with decisional incapacity in dementia research.Design, setting, and participantsOne hundred sixty persons age 50 years and older who participated in an all-day deliberative democracy session on the ethics of surrogate consent for dementia research. The deliberative democracy day consisted of both extensive, interactive education with experts in clinical research and ethics, as well as small group deliberations.MeasurementsAudiotaped small group deliberations were transcribed and analyzed and the main thematic elements were coded.ResultsDuring deliberation, participants acknowledged the limitations of advanced research directives and discussed ways to improve their use. Although there was consensus about the necessity of surrogate consent, the participants recognized potential pitfalls and looked for ways to safeguard the process. Participants supporting surrogate consent for research emphasized societal and individual benefits, the importance of assent, and trust in surrogates and the oversight system. Other participants felt that the high risk of some research scenarios was not sufficiently offset by benefits to patients or society.ConclusionsMembers of the older general public are able to make use of in-depth education and peer deliberation to provide reasoned and informed opinions on the ethical use of surrogate consent for dementia research. The public's approach to surrogate consent is one of cautious pragmatism: an overall trust in science and future surrogates with awareness of the potential pitfalls, suggesting that their trust cannot be taken for granted.
| S-EPMC3357450 | biostudies-literature
Project description:Around 90% of rape victims know their perpetrator, making acquaintance rape the most common form of rape, contradicting societal beliefs. There is ambiguity about the meaning and use of consent in sexual scenarios (Beres, 2007). This study used a mixed methods approach to test the effectiveness of a campaign video aimed at increasing understanding of consent. We assessed whether the video affected rape judgments in vignettes depicting consensual or non-consensual sexual scenarios. We also manipulated whether making consent the primary or secondary question influenced attitudes. Text responses were also obtained to gain an insight into participant reasoning. The campaign showed no increase in rape judgments. Making consent primary in question order did lead to greater accuracy in rape judgment. A content analysis of the free-text responses indicated that the presence of the campaign actually reduced people's use of consent in explaining why a scenario may represent rape: Instead they focused on the attractiveness of the attacker. These results are discussed in relation to the effectiveness of passively viewing campaign material.
| S-EPMC7399096 | biostudies-literature
Project description:BACKGROUND:Both the research literature and headline news stories indicate that the public cares about how their health data are used. The objective of this study was to learn more about the general public's attitudes toward users and uses of linked administrative health data held by ICES in Ontario, Canada. METHODS:Eight focus groups, with a total of 65 members of the general public, were conducted in urban and northern settings in Ontario, Canada, in 2015 and 2017 using qualitative market research panels established by a market research/public opinion research firm. RESULTS:Three major themes emerged: (a) the need for assurance about privacy and security, (b) general support for research based on linked administrative health data with some conditions and (c) mixed and more negative reaction when there is private sector involvement. Two minor themes were also derived from the data: (a) low knowledge and understanding of how linked administrative health data are used for research and (b) mixed views on the need to obtain consent when health data do not include identifying information. INTERPRETATION:The public generally supports research based on linked administrative health data, but there is no blanket approval. Researchers and organizations that hold health data should engage with members of the public to understand and address their concerns about privacy and security and to ensure that research is aligned with social licence, particularly where there is private sector involvement.
| S-EPMC6375226 | biostudies-literature
Project description:This paper analyzes the awareness and attitudes of the Chinese public toward genetically modified (GM) foods with different types of labeling and evaluates the impact of public confidence in the government management of GM food labeling has on their attitude. From 2015 to 2016, we conducted a series of surveys to collect data from 1730 respondents, which included consumers, farmers, media, and local agricultural officials in agricultural departments. The results show ~60% of the Chinese public do not know that they usually consume or purchase GM products or products containing GM ingredients. Nearly 80% of the Chinese public are accepting foods labeled as not containing GM ingredients, 57% are accepting foods without labeling, and ~40% are accepting GM-labeled foods. The respondents with a lack of confidence in the government are less likely to embrace GM foods. Those that are more aware of GM products are more likely to accept GM labeled foods. The group having the most positive attitude toward GM-labeled foods is the media, followed by agricultural officials, while the group having the most negative attitude toward GM labeled foods is farmers. Our findings provide an empirical basis to inform GM food labeling policy discussions and possible revisions, which may promote the development of GM foods in China.
| S-EPMC6763464 | biostudies-literature
Project description:Minority populations have been underrepresented in clinical trials, as well as in research biobanks that are created to conduct research with participants' biospecimens and related medical and research data. Biobank research raises issues about informed consent and privacy and the confidentiality of participants' personal data. Our study involved three focus groups of 10 adults each that were conducted in a medically underserved, predominantly African American community to elucidate questions and concerns regarding an institutional biobank. Transcripts from the discussion were qualitatively analyzed. Three main themes that arose from the focus groups included the importance of trust, the importance of the community in research, and suggestions to improve trust. The concerns identified in this study provide a starting point for future research to help research institutions become more trustworthy to the communities they serve.
| S-EPMC9836386 | biostudies-literature
Project description:Background: Biobanks have become an increasingly important means of biomedical research and innovation. However, they entail a variety of ethical, social and legal challenges, which need to be publicly discussed and managed collectively. A certain level of public awareness of biobank research is an important prerequisite for the public to form an opinion on the issue at hand and to be willing to participate in public engagement activities. For many countries, including Germany, recent information on the public's awareness of and attitude toward biobanks is scarce. Methods: Therefore, by means of a postal survey in a German urban region, this study updates data from the 2010 Eurobarometer by analyzing (1) the public's awareness of biobanks, (2) their general attitude toward biobanks, and (3) their hypothetical willingness to donate their own biological samples and personal or medical data. Results: Overall, 204 (20.4%) of 998 delivered questionnaires were returned. The majority of survey respondents stated a positive attitude toward medical research (95.5%) and - to a somewhat lower degree - toward genetic research (61.3%). Attitudes toward biobanks were mixed but positive for the majority of respondents: in a question about their spontaneous assessment of biobanks as a means for medical research, 77% showed positive attitudes toward biobanks (36.6% "definitely" and 40.5% "somewhat positive"). This finding is also reflected in a high proportion of individuals willing to participate in biobank research: 70.4% of respondents would be willing to donate biomaterial to a biobank during a hypothetical stay in hospital. In spite of the high overall support respondents show for biobanks (e.g., positive general attitude and willingness to participate), only about one third (30.8%) had previously heard of biobanks. Discussion and Conclusion: The comparison of survey results with prior data from the 2010 Eurobarometer indicates that public awareness of biobanks remains low. A higher level of biobank awareness can be assumed to be one prerequisite for public engagement in future decisions on biobank governance. We therefore argue that to increase public awareness of biobanks and to enable public involvement in biobank governance, publicly available and understandable information must be provided and disseminated.
| S-EPMC5977155 | biostudies-literature