Can the governance of a population genetic data bank effect recruitment? Evidence from the public consultation of Generation Scotland

Abstract

Our objective was to identify an acceptable governance model for population genetic data banks through measuring the importance of different ethical and social concerns and their relationship to reported likelihood to participate. We conducted a face-to-face interview survey of 1,001 members of the general adult Scottish population who were 16 and over, and included a discrete choice experiment. The results showed a quarter of respondents said that they were certain or very likely to take part in genetic database research. However, reported willingness to participate seemed to be unaffected by further information or governance options. We conclude participation is driven by personal and mundane, everyday factors rather than concerns about governance. However, this should not be seen as a reason to relax the transparent and robust governance frameworks currently under development.

Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment

“…DCE analysis has its origin in market research, where it was originally used to identify factors influencing demand for different products, however it has come to be used in a wide range of research areas including public health and health care (e.g. 16,17).…”

Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions

“…These findings concur with a recent Scottish study, which indicates that individual's decisions about whether to participate in biobank research are driven by considerations other than those related to the governance structure of biobanks. 20 Finally, it is worth noting that our study was conducted in Canada where all citizens enjoy access to a publicly funded healthcare system and thus generally express fewer concerns about privacy and confidentiality as it pertains to issues such as genetic discrimination. 28 This might explain in part the lower priority our participants gave to privacy concerns in this regard.…”

“…Rather, any good or service represents a package or bundle of different features or characteristics; each individual decision in turn involves assessing a variety of characteristics and conducting numerous value tradeoffs in determining which package best represents an individual's preferences, all things considered. 19,20 For example, when assessing whether the public is concerned about the privacy and confidentiality of their health information when participating in research using biobanked specimens, we need to understand how they weigh the value of personal privacy when compared with other attributes or characteristics associated with this type of research. The package of characteristics assessed in this study includes privacy and confidentiality, the nature of the condition being studied (research focus), and who might benefit from the proposed research (research beneficiary).…”

Consent and Research Governance in Biobanks: Evidence from Focus Groups with Medical Researchers

“…[17,18]]. Such quantitative studies have been usefully complemented by detailed, qualitative studies of citizen attitudes [19,20].…”

“…These studies have sought to understand patient attitudes toward a variety of issues, including trade-offs between individual privacy concerns and societal benefits of research [4] and patient perspectives on whether seeking explicit reconsent for new research uses would increase participation [17]. …”