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Adherence to published ethical guidelines by the UK genetics research community

Nature Genetics volume 34, pages 117–119 (2003)Cite this article

To the editor

There has been increasing emphasis over the past decade on the ethico-legal quality of medical research with a particular focus on genetic research, where study results may affect not only the individual volunteer but also family members and ethnic groups1. Since 1993, UK Government advisory committees2,3, especially the Human Genetics Commission4; professional bodies regulating and monitoring medical practice5,6,7,8,9,10; the UK Medical Research Council11,12; the Nuffield Council on Bioethics13,14; and the Human Genome Organisation15 have all published guidelines for the pursuit of clinical genetic research in this country. Emerging from these different groups is a broad professional consensus of remarkable consistency that identifies acceptable patterns of good professional practice rather than detailed decision-making. The results emphasize the importance of a robust doctrine of informed consent, confidentiality, provisions for the feedback of results relevant to clinical management of individuals and quality control in the sharing of genetic samples and data.

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References

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  13. Nuffield Council on Bioethics. Genetic Screening: Ethical Issues. (Nuffield Council Publications, London, 1993).

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Authors and Affiliations

  1. William Harvey Research Institute, Queen Mary's School of Medicine & Dentistry, Charterhouse Square, London, EC1M 6BQ, UK

    Nicolas J Goulding

  2. Department of Medical Ethics at Barts and The London, Queen Mary's School of Medicine & Dentistry, Charterhouse Square, London, EC1M 6BQ, UK

    Heather C Waddell & Len Doyal

Authors
  1. Nicolas J Goulding
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  2. Heather C Waddell
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  3. Len Doyal
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Corresponding author

Correspondence to Nicolas J Goulding.

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Goulding, N., Waddell, H. & Doyal, L. Adherence to published ethical guidelines by the UK genetics research community. Nat Genet 34, 117–119 (2003). https://doi.org/10.1038/ng0603-117

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