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Children and incompetent adults in genetic research: consent and safeguards

Abstract

Recent changes to the legal and ethical criteria that govern the inclusion of children and incompetent adults in genetic research are likely to lead to advances in research, but might leave the rights of the participants in this research in need of additional safeguards. Here, we discuss why this might be and propose policy considerations that could help to protect the rights of these particularly vulnerable groups of research participants.

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Acknowledgements

The authors thank M. Howlett for her assistance, and the Genetics and Society Project for its support during the preparation of the manuscript.

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Correspondence to Bartha Maria Knoppers.

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DATABASES

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Alzheimer disease

hypothyroidism

phenylketonuria

schizophrenia

FURTHER INFORMATION

1997 European Convention on Human Rights and Biomedicine

A list of Health Care Ethics Institutions and Organizations

American Society of Human Genetics

CIOMS

Code of Nuremberg

Council of Europe

Declaration of Helsinki

European Society of Human Genetics

HumGen

Medical Research Council

Nuffield Council on Bioethics

UNESCO

World Health Organization

World Medical Association

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Knoppers, B., Avard, D., Cardinal, G. et al. Children and incompetent adults in genetic research: consent and safeguards. Nat Rev Genet 3, 221–225 (2002). https://doi.org/10.1038/nrg750

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