A novel ‘social contract’ – An attempt to harmonize a sponsor's exploratory research with a clinical study participant's data rights

A novel ‘social contract’ – An attempt to harmonize a sponsor's exploratory research with a clinical study participant's data rights

Background: Pharmaceutical drug development rarely addresses a study participant's control of their genomic data, how to return individual incidental findings, and how to make use of genomic data more efficiently for exploratory research purposes. Mutually beneficial solutions to these issues a...

Full description

Bibliographic Details
Main Authors: Allen, N. (Author), Ciofani, D. (Author), Doan, K. (Author), Elder, L. (Author), Hart, C.E (Author), Matar, D. (Author), Mignon, L. (Author), Milton, J. (Author), Montenegro, D. (Author), Murphy, M. (Author), Rigo, F. (Author), Sahelijo, L. (Author), Sasaki, S. (Author), Yun, C. (Author)
Format: Article
Language:English
Published: Elsevier Inc. 2022
Subjects:
Confidentiality
Control of access
Data access
Data disclosure
Exploratory research
Future
Incidental findings
Privacy
Unspecified
Whole genome sequencing
Online Access:View Fulltext in Publisher

Internet

View Fulltext in Publisher

Similar Items