The Impact of Commercialisation and Genetic Data Sharing Arrangements on Public Trust and the Intention to Participate in Biobank Research

Abstract

Objectives: The necessity for biobanks to share their resources with third parties poses potential risks to public trust and the intention to participate in genetic research. We explore the effects of data sharing and the type of third-party access (public vs. private) on public trust and, in turn, the intention to participate in biobank research. Methods: An experimental design was used to assess a national sample of 1,701 Australians via a computer-assisted telephone interview. Results: The results revealed that trust and the intention to participate significantly decreased in relation to private compared to public biobanks, and when access to third-party researchers was allowed compared to when it was not. Somewhat surprisingly, no differences were found in relation to the third party being international compared to Australian, but trust and the intention to participate were significantly eroded when private third parties were allowed access. Those with a university education were particularly distrustful of private biobanks and biobanks that allowed access, while those who were more aware of genetic databases appeared more confident with biobanks sharing with private-sector third parties. Conclusion: The pattern of results suggests that public awareness of the need for biobanks to share their resources widely needs to be increased to maintain public trust and support.

Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults: A Qualitative Study

“…Next to altruistic reasons, participants were motivated to donate their genetic data for research to receive financial compensation [29]. However, participants stated that they are only willing to participate in research when sharing data does not pose a threat to public trust [32]. Sharing sensitive data such as genomic information creates a tension in political discussions regarding advancing research and protecting the data and assuring privacy to the participants [33].…”

Dynamic Consent: a potential solution to some of the challenges of modern biomedical research

“…For example, in the Platform for Engaging Everyone Responsibly (PEER) [44], a tool developed by the Genetic Alliance [45] and Private Access [46], research participants may indicate the type of access that they approve and do not approve of, in a matrix. Researchers may also ask participants to consent to a range of other activities at any time; these include data deposit in public research databases [47], data sharing with drug companies and privately-funded institutions [48, 49], or the use of biological samples in case of death or incapacity. This solution enables researchers to know exactly which levels of privacy risks research participants are willing to take and which data may or may not be used in the research.…”

Participation in Genetic Research: Amazon's Mechanical Turk Workforce in the United States and India

“…A similar concern has been found in studies focused on biobanking. For example, in Australia, participant trust was less when biobanks shared information and materials with other researchers [28]. There was greater trust in public biobanks compared to private ones, and lesser trust in biobanks that shared data.…”

“…This preference for being involved in decisions about future use of DNA or use by others was reinforced by another UK study, although increased knowledge about genetics was associated with a less restrictive view [30]. Ultimately, confidentiality and data ownership are important issues for participants in genetic research and there is variation in attitudes toward data sharing [3,4,26,28]. …”