Dataset Information

Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey.

ABSTRACT: The ethical debate surrounding biobanks has focused on protecting donors' welfare and privacy. However, little attention has been given to the ethical significance of donor interests that go beyond privacy and welfare (non-welfare interests [NWIs]), such as their concerns about the moral or religious implications of researchers using their donated samples. Using an experimental survey design with 1,276 participants recruited via Amazon Mechanical Turk (MTurk), we studied the potential impact of eight NWI scenarios on people's attitudes toward research studies being performed on samples donated to biobanks by assessing willingness to donate, attitudes toward disclosure of NWIs, impact of timing and format of disclosure (number of NWIs disclosed on a page), and participant factors associated with willingness to donate. Baseline willingness to donate to biobanks prior to any mention of NWIs was comparable with previous studies, at 85% to 89%. Most participants wanted NWI disclosures prior to donation to biobanks, but far fewer favored specific consent. Overall pattern of responses showed that as participants receive more information about NWIs, willingness to donate decreases in a scenario dependent manner. Specifically, NWI concerns about profit seeking research and insurance risk assessment had the strongest impact, even greater than controversial issues such as reproductive research, regardless of political, religious, and most other characteristics of respondents. Based on the results, a schema of NWI types is proposed that could be used for further research and policy discussions.

SUBMITTER: Gornick MC

PROVIDER: S-EPMC5558242 | biostudies-literature | 2014 Oct

REPOSITORIES: biostudies-literature

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Publications

Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey.

Gornick Michele C MC Ryan Kerry A KA Kim Scott Y H SY

Journal of empirical research on human research ethics : JERHRE 20140811 4

The ethical debate surrounding biobanks has focused on protecting donors' welfare and privacy. However, little attention has been given to the ethical significance of donor interests that go beyond privacy and welfare (non-welfare interests [NWIs]), such as their concerns about the moral or religious implications of researchers using their donated samples. Using an experimental survey design with 1,276 participants recruited via Amazon Mechanical Turk (MTurk), we studied the potential impact of ...[more]

PMID: 25747294

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Project description:BackgroundMaintaining adequately high organ donation rates proves essential to offering patients all appropriate and available treatment options. However, the act of donation is in itself an individual decision that requires a depth of understanding that interacts with the social setting and the institutional framework into which an individual is embedded. This study contributes to understanding factors driving organ donation rates by examining how country regulation, individuals' awareness of regulatory setting, social interactions and socio-demographic determinants influence individuals' willingness to donate their own organs or those of a relative.MethodsWe draw representative data from the Eurobarometer survey 58.2 undertaken in 2002 with respondents throughout the European Union to capture heterogeneity in institutional setting. We use logistic regression techniques to estimate the determinants of willingness to donate one's own organs and those of a deceased relative. We employ interaction terms to examine the relationship between institutional setting and respondent's awareness of organ donation legislation in their country.ResultsOur findings indicate that individuals are more likely to donate their organs than to consent to the donation of a relative's organs. Both decisions are affected by regulation (presumed consent), awareness of regulation and social interactions such as the ability to count on others in case of a serious problem (reciprocity). Furthermore, education (more educated), age (younger), expressing some sort of political affiliation determine willingness to donate one's own organs and consent to the donation of those of a relative.ConclusionThis study confirms and develops further previous research findings that presumed consent organ donation policy positively affects the willingness of individuals to donate their own organs and those of relative by highlighting the importance of awareness of this regulation and an individual's level of social interactions in making choices about donation. Results found using interaction terms underline the importance of population awareness of organ donation legislation as well as the legislation type itself. Findings also point to the role of social interactions in influencing individuals' willingness to donate their organs or those of a relative.

Project description:Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one's DNA and health data for research is relatively low, and trust in the process of data's being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our "Your DNA, Your Say" study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.

Dataset Information

Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey.

Publications

Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey.

Similar Datasets

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