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

2019; JMIR Publications; Volume: 21; Issue: 8 Linguagem: Inglês

10.2196/14384

1439-4456

Kerina Jones, Helen Daniels, Emma Squires, David Ford,

Prenatal Screening and Diagnostics

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.