Informed Consent for Genetic and Genomic Research

Current Protocols in Human Genetics
Volume 108, Issue 1 December 2020


Informed Consent for Genetic and Genomic Research
Jeffrey R. Botkin
First Published:17 November 2020
Genetic research often utilizes or generates information that is potentially sensitive to individuals, families, or communities. For these reasons, genetic research may warrant additional scrutiny from investigators and governmental regulators, compared to other types of biomedical research. The informed consent process should address the range of social and psychological issues that may arise in genetic research. This article addresses a number of these issues, including recruitment of participants, disclosure of results, psychological impact of results, insurance and employment discrimination, community engagement, consent for tissue banking, and intellectual property issues. Points of consideration are offered to assist in the development of protocols and consent processes in light of contemporary debates on a number of these issues.