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Informed Consent and the Protection of Human Subjects in Genomic Research with Children and Families

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Handbook of Genomics and the Family

Part of the book series: Issues in Clinical Child Psychology ((ICCP))

Abstract

Consideration of the ethics of genetic testing of children under research auspices is complex under any circumstances. Because of contemporary issues that affect such analysis, any attempt to parse the topic must be very exacting. Such issues include the following:

• the increasing volume of pediatric research, which will presumably lead to an increase in genetic research in this population;

• the ongoing debate in genetics research about the obligations of researchers to share the individual results of molecular testing with subjects (and presumably, families, when such subjects are children);

• how to best understand the data that has come from studies about the possible harms to individual children of receiving genetic testing results; and

• the best ways to apply traditional bioethical analysis about participation of children in clinical research to enrolling children in such studies that include genetic testing.

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  1. Massachusetts General Hospital, Boston, MA, USA

    John G. Twomey

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  1. Division of Health Outcomes & Health Beh, Department of Oncology, Georgetown University, Whitehaven St, NW 3300, Washington, 20007, District of Columbia, USA

    Kenneth P. Tercyak

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Twomey, J.G. (2010). Informed Consent and the Protection of Human Subjects in Genomic Research with Children and Families. In: Tercyak, K. (eds) Handbook of Genomics and the Family. Issues in Clinical Child Psychology. Springer, Boston, MA. https://doi.org/10.1007/978-1-4419-5800-6_19

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