Social licence and the general public's attitudes toward research based on linked administrative health data: a qualitative study.
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ABSTRACT:
SUBMITTER: Paprica PA
PROVIDER: S-EPMC6375226 | biostudies-literature | 2019 Jan-Mar
REPOSITORIES: biostudies-literature
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Project description:In this study, we evaluate the effect of education and deliberation on the willingness of members of the public to donate tissue to biobank research and on their attitudes regarding various biobank consent policies. Participants were randomly assigned to a democratic deliberation (DD) group, an education group that received only written materials, and a control group. Participants completed a survey before the deliberation and two surveys post-deliberation: one on (or just after) the deliberation day, and one 4 weeks later. Subjects were asked to rate 5 biobank consent policies as acceptable (or not) and to identify the best and worst policies. Analyses compared acceptability of different policy options and changes in attitudes across the three groups. After deliberation, subjects in the DD group were less likely to find broad consent (defined here as consent for the use of donations in an unspecified range of future research studies, subject to content and process restrictions) and study-by-study consent acceptable. The DD group was also significantly less likely to endorse broad consent as the best policy (OR = 0.34), and more likely to prefer alternative consent options. These results raise ethical challenges to the current widespread reliance on broad consent in biobank research, but do not support study-by-study consent.
| S-EPMC5838972 | biostudies-literature
Project description:OBJECTIVES:Many countries and organizations have promoted the disclosure of patient safety incidents (DPSI). However, reporting frequency and quality of DPSI fall short of patient and caregiver' expectations. In this study, we examined the attitudes toward DPSI of the general public representing the Korean population. METHODS:Survey questions were developed based on a previous systematic review and qualitative research. Face-to-face interviews using paper-based questionnaires were conducted. We explored attitudes toward DPSI in various scenarios and opinions on methods to facilitate DPSI. RESULTS:Almost all participants answered that it is necessary to disclose major errors (99.9%) and near misses (93.3%). A total of 96.6% (675/699) agreed that "DPSI will lead physicians to pay more attention to patient safety in the future," and 94.1% (658/699) agreed that "DPSI will make patients and their caregivers trust the physician more." Although 79.7% (558/700) agreed that "apology law will limit patients' ability to prove physicians' negligence," 95.4% (668/700) agreed with "I support the introduction of apology law." Moreover, 90.6% (634/700) agreed with "I support the introduction of mandatory DPSI." CONCLUSIONS:This study showed the overwhelmingly positive attitude of the public toward DPSI. The positive opinion of the public about apology law suggests the possibility of introducing the disclosure policy coupled with legislation of apology law in South Korea.
| S-EPMC7046138 | biostudies-literature
Project description:BackgroundAlthough primarily used for social networking and often used for social support and dissemination, data on social media platforms are increasingly being used to facilitate research. However, the ethical challenges in conducting social media research remain of great concern. Although much debated in the literature, it is the views of the public that are most pertinent to inform future practice.ObjectiveThe aim of our study was to ascertain attitudes on the ethical considerations of using social media as a data source for research as expressed by social media users and researchers.MethodsA systematic review was conducted, wherein 16 databases and 2 Internet search engines were searched in addition to handsearching, reference checking, citation searching, and contacting authors and experts. Studies that conducted any qualitative methods to collect data on attitudes on the ethical implications of research using social media were included. Quality assessment was conducted using the quality of reporting tool (QuaRT) and findings analyzed using inductive thematic synthesis.ResultsIn total, 17 studies met the inclusion criteria. Attitudes varied from overly positive with people expressing the views about the essential nature of such research for the public good, to very concerned with views that social media research should not happen. Underlying reasons for this variation related to issues such as the purpose and quality of the research, the researcher affiliation, and the potential harms. The methods used to conduct the research were also important. Many respondents were positive about social media research while adding caveats such as the need for informed consent or use restricted to public platforms only.ConclusionsMany conflicting issues contribute to the complexity of good ethical practice in social media research. However, this should not deter researchers from conducting social media research. Each Internet research project requires an individual assessment of its own ethical issues. Guidelines on ethical conduct should be based on current evidence and standardized to avoid discrepancies between, and duplication across, different institutions, taking into consideration different jurisdictions.
| S-EPMC5478799 | 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: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:While tracking-data analytics can be a goldmine for institutions and companies, the inherent privacy concerns also form a legal, ethical and social minefield. We present a study that seeks to understand the extent and circumstances under which tracking-data analytics is undertaken with social licence-that is, with broad community acceptance beyond formal compliance with legal requirements. Taking a University campus environment as a case, we enquire about the social licence for Wi-Fi-based tracking-data analytics. Staff and student participants answered a questionnaire presenting hypothetical scenarios involving Wi-Fi tracking for university research and services. Our results present a Bayesian logistic mixed-effects regression of acceptability judgements as a function of participant ratings on 11 privacy dimensions. Results show widespread acceptance of tracking-data analytics on campus and suggest that trust, individual benefit, data sensitivity, risk of harm and institutional respect for privacy are the most predictive factors determining this acceptance judgement.
| S-EPMC8139460 | biostudies-literature
Project description:Background: Periodic general health examinations (GHEs) are gradually becoming more popular as they employ subclinical screenings, as a means of early detection. This study considers the effect of information technology (IT), health communications and the public's attitude towards GHEs in Vietnam. Methods: A total of 2,068 valid observations were obtained from a survey in Hanoi and its surrounding areas. Results: In total, 42.12% of participants stated that they were willing to use IT applications to recognise illness symptoms, and nearly 2/3 of them rated the healthcare quality at average level or below. Discussion: The data, which was processed by the BCL model, showed that IT applications (apps) reduce hesitation toward GHEs; however, older people seem to have less confidence in using these apps. Health communications and government's subsidy also increased the likelihood of people attending periodic GHEs. The probability of early check-ups where there is a cash subsidy could reach approximately 80%.
| S-EPMC5247783 | biostudies-literature
Project description:BackgroundMedical cannabis has been legally available in Canada since 2001, but its benefits and harms remain uncertain. We explored attitudes toward medical cannabis among family physicians practising in Ontario.MethodsBetween January and October 2019, we conducted a qualitative study of Ontario family physicians using semistructured telephone interviews. We applied thematic analysis to interview transcripts and identified representative quotes.ResultsEleven physicians agreed to be interviewed, and 3 themes regarding medical cannabis emerged: reluctance to authorize use, concern over harms and lack of practical knowledge. Participants raised concerns about the limited evidence for, and their lack of education regarding, the therapeutic use of cannabis, particularly the harms associated with neurocognitive development, exacerbation of mental illness and drug interactions in older adults. Some participants thought medical cannabis was overly accessible and questioned their role following legalization of recreational cannabis.InterpretationDespite the increasing availability of medical cannabis, family physicians expressed reluctance to authorize its use because of lack of knowledge and concerns regarding harms. Family physicians may benefit from guidance and education that address concerns they have surrounding medical cannabis.
| S-EPMC8084545 | 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
Project description:BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social licence for achieving such ethical governance.Main textWe performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence.ConclusionsThere are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance.
| S-EPMC8353823 | biostudies-literature