The ethics of human gene transfer

Abstract

Almost 20 years since the first gene-transfer trial was carried out in humans, the field has made significant advances towards clinical application. Nevertheless, it continues to face numerous unresolved ethical challenges — among them are the question of when to initiate human testing, the acceptability of germline modification and whether the technique should be applied to the enhancement of traits. Although such issues have precedents in other medical contexts, they take on a different character in gene transfer, in part because of the scientific uncertainty and the social context of innovation.

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Acknowledgements

I regret that, owing to the brevity of this Perspective, many important contributions to the literature on gene-transfer ethics went unmentioned. The work of the author is funded by a Canadian Institutes of Health Research Maud Menten New Principal Investigator Award.

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DATABASES

OMIM

ADA–SCID

chronic granulomatous disease

cystic fibrosis

haemophilia B

Hodgkin disease

hyperargininaemia

ornithine transcarbamylase deficiency

X-SCID

FURTHER INFORMATION

Jonathan Kimmelman's homepage

Database of gene-transfer clinical trials in the United States

Genetic Modification Clinical Research Information System (GeMCRIS) database

Guidance on informed consent for gene-transfer trials from the National Institutes of Health

Information on the status of human gene transfer

Information on the regulation and status of human gene transfer in Europe and elsewhere

Journal of Gene Medicine database

Overview of ethical issues and literature surrounding human gene transfer

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Kimmelman, J. The ethics of human gene transfer. Nat Rev Genet 9, 239–244 (2008). https://doi.org/10.1038/nrg2317

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