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

ABSTRACT:

Background

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.

Objective

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, an

SUBMITTER: Jones KH 

PROVIDER: S-EPMC6727690 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature