Should Individuals Share Their Genomic Profiles? Researchers and patient advocates wrestle with privacy and ethical concerns

John Tibbetts, Claudia Pagliari

Research output: Contribution to journalComment/debate

Abstract

The article by John Tibbets draws on a series of interviews with researchers and patient advocates active in the areas of health data ethics, privacy and regulation. Dr Claudia Pagliari comments on the issues surrounding genetic data, which is becoming increasingly available with the development of consumer DNA testing kits, with potential to link to other sources of personal data. She reflects on issues for trust and choice in an environment where personal data is being increasingly harvested and monetised, and considers some of the challenges for effective regulation.
Original languageEnglish
JournalBioScience
Volume68
Issue number9
Publication statusPublished - Sep 2018

Keywords

  • Data Ethics
  • Data Brokers
  • Genetics
  • Digital Health
  • Bioethics
  • DNA
  • Privacy
  • Data protection
  • GDPR
  • Regulation
  • DTC-GT

Fingerprint

Dive into the research topics of 'Should Individuals Share Their Genomic Profiles? Researchers and patient advocates wrestle with privacy and ethical concerns'. Together they form a unique fingerprint.

Cite this