Numerous ethical, legal, and social issues arise with biological sample sharing. The study
explored the perspectives of genetic and genomic researchers on the sharing of biological …

Background Biobanks increasingly employ public involvement and engagement strategies,
though few studies have explored their impact. This review aims to (a) investigate how the …

The current emphasis on broad sharing of human genomic data generated in research in
order to maximize utility and public benefit is a significant legacy of the Human Genome …

Currently, the ethics infrastructure–from medical and scientific training to the scrutiny of
ethics committees–focuses on trying to reform informed consent to do a job which it is simply …

Autism spectrum disorder (ASD) is a group of complex neurodevelopmental disorders with
diverse clinical manifestations and symptoms. In the last 10 years, there have been …

This study reports on 13 semistructured in-depth interviews to qualitatively explore the
experiences of individuals who publicly shared their direct-to-consumer genetic testing …

Background Meaningful and generalizable research depends on patients' willingness to
participate. Studies often fail to reach satisfactory representativeness. Objective This paper …

Exponential increases in digital data and calls for participation in human research raise
questions about when and why individuals voluntarily provide personal data. We conducted …

Ethnic differences in disease susceptibility and drug response necessitate the participation
of the community in biomedical research. Public involvement includes the donation of …

Background Consent for data research in acute and critical care is complex as patients
become at least temporarily incapacitated or die. Existing guidelines and regulations in the …