Towards a trusted genomics repository: Identifying commercialisation fears and preferred forms of governance across segments of the community.

Abstract

A latent class analysis on a nationally representative Australian sample (N = 1000) identified four subgroups (i.e. classes), ranging from high to low concern about, and willingness to donate to, a national genomic repository under different forms of public and commercial management and access. The distribution of concerns and governance preferences across these classes was investigated. This added to previous research by indicating the degree to which extant concerns (e.g. corporate profiteering, discrimination by insurers) are held by different segments of the community. Based on the governance mechanisms that had widespread support across segments, the following recommendations are made to develop a trusted Australian genomic repository: the repository cannot be solely profit-driven; can utilise an access committee; protections (e.g. ensuring confidentiality of donors) may not require new legislation; data users cannot retain data for future research; the public should remain informed about the intended and/or actual benefits of research.