A principled approach to cross-sector genomic data access

Smith, Marcus; Miller, S.R.M.

doi:10.1111/bioe.12919

A principled approach to cross-sector genomic data access

Title

A principled approach to cross-sector genomic data access

Author

Smith, Marcus (Charles Sturt University)
Miller, S.R.M. (TU Delft Ethics & Philosophy of Technology; Charles Sturt University; University of Oxford)

Date

2021

Abstract

Genomic data is growing in importance as scientific knowledge and technology develop, and in availability, as direct-to-consumer genomic health testing and recreational genealogy services become more widely utilized. Access to genomic data needs to be considered in light of individual privacy. Cross-sector use of genomic health and ancestry data, and by law enforcement in particular, raises ethical questions and requires appropriate regulation. This article discusses the significance of genomic data and focuses on investigative genetic genealogy, namely the use of genomic health and ancestry data to advance law enforcement, as an example of cross-sector use. An ethical framework is developed that contributes to a more principled approach to genomic data access.

Subject

direct-to-consumer genomic testing
DNA evidence
genomic data
investigative genetic genealogy
privacy
recreational genealogy

To reference this document use:

http://resolver.tudelft.nl/uuid:601f8302-4bb3-4393-a1d1-7e78a2312feb

DOI

https://doi.org/10.1111/bioe.12919

ISSN

0269-9702

Source

Bioethics, 35 (8), 779-786

Part of collection

Institutional Repository