Participant Values


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The Participant Values Task Team will explore participants’ attitudes and perceptions of genomic data sharing in various circumstances. The Task Team will develop an international survey to explore the attitudes of potential research participants and other stakeholders (e.g., health professionals) relating to the communication of genomic data and issues surrounding individual level data sharing. The survey will integrate films to distill complex concepts and take account for linguistic and cultural differences across countries. The survey will be designed and piloted by the Task Team and circulated online through the GA4GH network. Concurrently, a comparative review of laws and policies will be carried out to identify legal and ethical issues related to an individual’s right to access his or her own raw genomic data or health related data and suggest ways to address OR overcome them. The results of these two activities will guide the development of policies for providing individual access to patients and participants in data sharing projects.