JMIR Publications

ABSTRACT

Background:

The literature abounds with increasing numbers of research studies using genomic and health data (such as, health records, phenotypic and lifestyle data) in combination, with great potential for large-scale research and precision medicine. However, concerns have been raised about social acceptability and risks posed for individuals and their kin. Whilst there has been public engagement on various aspects of this topic, there is a lack of information about public views on data access models.

Objective:

To address the lack of information on the social acceptability of access models for reusing genomic data collected for research in conjunction with health data. Models considered were: open online access; released externally to researchers; and access within a data safe haven.

Methods:

Views were ascertained via a series of 8 public workshops (N=116). The workshops included an explanation of benefits and risks in using genomic data with health data, a facilitated discussion and an exit questionnaire. The resulting quantitative data were analysed using descriptive and inferential statistics, and the qualitative data were analyzed for emerging themes.

Results:

Respondents placed a high value on the reuse of genomic data, but raised concerns including: data misuse, information governance and discrimination. They showed a preference for giving consent and for use of data within a safe haven over external release or open access. Perceived risks with: open access included data being used by unscrupulous parties; external release included data security; with safe havens included the need for robust safeguards.

Conclusions:

This is the first known study exploring public views of access models for reusing anonymised genomic and health data in research. It indicated that people are generally amenable, but prefer data safe havens because of perceived sensitivities. We recommend that public views be incorporated into guidance on models for the reuse of genomic and health data.