Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study.

Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study.

Publication date: Aug 21, 2019

The literature abounds with increasing numbers of research studies using genomic data in combination with health data (eg, health records and phenotypic and lifestyle data), 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. Although there has been public engagement on various aspects of this topic, there is a lack of information about public views on data access models.

This study aimed 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 web-based access, released externally to researchers, and access within a data safe haven.

Views were ascertained using 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 analyzed using descriptive and inferential statistics, and the qualitative data were analyzed for emerging themes.

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 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, with external release included data security, and with safe havens included the need for robust safeguards.

This is the first known study exploring public views of access models for reusing anonymized 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.

Open Access PDF

Jones, K.H., Daniels, H., Squires, E., and Ford, D.V. Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study. 05229. 2019 J Med Internet Res (21):8.

Concepts Keywords
Discrimination Genomics
Inferential Statistics Open web
Open Access
Phenotypic
Precision Medicine
Questionnaire

Semantics

Type Source Name
gene UNIPROT CISH
gene UNIPROT ITGBL1
gene UNIPROT SLC35G1
gene UNIPROT DESI1
disease MESH men
disease MESH privacy
gene UNIPROT PTPN5
gene UNIPROT EAF2
gene UNIPROT RAN
drug DRUGBANK Ranitidine
gene UNIPROT ARID1A
gene UNIPROT DNMT1
gene UNIPROT CD69
gene UNIPROT ANXA13
disease MESH employment
disease DOID anemia
disease MESH anemia
disease DOID cystic fibrosis
disease MESH cystic fibrosis
disease MESH diagnosis
gene UNIPROT NHS
gene UNIPROT SCN8A
gene UNIPROT PDC
pathway BSID Release
gene UNIPROT KIN
disease DOID kin
gene UNIPROT LARGE1
gene UNIPROT RXFP2
disease MESH lifestyle

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