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  • EELS (Ethical Economic Legal and Social) Article
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[Ethical, Economic, Legal & Social] EELS Paper

Informed consent in the context of pharmacogenomic research: ethical considerations

The Pharmacogenomics Journal volume 11, pages 155–161 (2011)Cite this article

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Abstract

Although the scientific research surrounding pharmacogenomics (PGx) has been relatively plentiful, the ethical research concerning this discipline has developed rather conservatively. Following investigation of the ethical, legal and social issues (ELSI) of PGx research, as well as consulting with key stakeholders, we identified six outstanding ethical issues raised by the informed consent process in PGx research: (1) scope of consent; (2) consent to ‘add-on’ studies; (3) protection of personal information; (4) commercialization; (5) data sharing; and (6) potential risks stemming from population-based research. In discussing these six areas as well as offering specific considerations, this article offers a solid base from which future practical guidelines for informed consent in PGx research can be constructed. As such, this effort works toward filling the ELSI gap and provides ethical support to the numerous PGx projects undertaken by researchers every year.

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Acknowledgements

This work was made possible by a grant from Genome Canada and Genome Quebec held by Drs Tardif and Phillips. Dr Howard is funded by the European Commission FP7 Marie Curie initiative.

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Author notes

  1. H C Howard and Y Joly: These authors contributed equally to this work.

Authors and Affiliations

  1. Centre for Biomedical Ethics and Law, KULeuven, Leuven, Belgium

    H C Howard

  2. Department of Human Genetics, Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montréal, Québec, Canada

    Y Joly & D Avard

  3. Beaulieu-Saucier Université de Montréal Pharmacogenomics Centre and Montréal Heart Institute, Montréal, Quebéc, Canada

    N Laplante, M Phillips & J C Tardif

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  1. H C Howard
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  2. Y Joly
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  5. M Phillips
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  6. J C Tardif
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Correspondence to H C Howard.

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The authors declare no conflict of interest.

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Howard, H., Joly, Y., Avard, D. et al. Informed consent in the context of pharmacogenomic research: ethical considerations. Pharmacogenomics J 11, 155–161 (2011). https://doi.org/10.1038/tpj.2011.11

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