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Research Ethics in Genomics Research: Feedback of Individual Genetic Data to Research Participants

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Abstract

This paper discusses whether and when researchers have a moral obligation to give feedback on individual genetic research results. This unsettled debate has rapidly gained in urgency in view of the emergence of biobanks and the advances in next-generation sequencing technology, which has the potential to generate unequalled amounts of genetic data. This implies that the generation of many known and unknown genetic variants in individual participants of genetics/genomics research as intentionally or collaterally obtained by-products is unavoidable. In this paper, we review the debate regarding feedback of individual genetic data. As we conclude that valid reasons exist to adopt a duty to return genetic research results, a qualified disclosure policy is proposed. This policy contains a standard default package, possibly supplemented with (one or more of) three additional packages. Whereas the default package, containing life-saving information of immediate clinical utility, should be offered routinely and mandatorily to all research participants, offering (one of) the three additional packages is context-specific. In our opinion, such a qualified disclosure policy best balances the potential benefits of disclosure with the potential risks for research participants and the harm of unduly hindering biomedical research. We will end with questions that warrant further ethical debate.

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Notes

  1. 1.

    This paper is partly based on Bredenoord AL, Onland-Moret NC, van Delden JJM (2011a) Feedback of individual genetic results to research participants: In favor of a qualified disclosure policy. Human Mutation 32:1–7, and Bredenoord AL, Kroes HY, Cuppen E, Parker M, van Delden JJM (2011b) Disclosure of individual genetic data to research participants: The debate reconsidered. Trends in Genetics 27(2):41–47.

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Author information

Authors and Affiliations

  1. Department of Medical Ethics, Julius Center, University Medical Center, Utrecht, The Netherlands

    Annelien L. Bredenoord & Johannes J. M. van Delden

Authors
  1. Annelien L. Bredenoord
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  2. Johannes J. M. van Delden
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Corresponding author

Correspondence to Annelien L. Bredenoord .

Editor information

Editors and Affiliations

  1. Inst. Medizinische Ethik und, Geschichte der Medizin, Universität Bochum, Markstr. 258a, Bochum, 44799, Germany

    Jan Schildmann

  2. , Institute for Medical Ethics, Ruhr University Bochum, Markstr. 258a, Bochum, 44799, Germany

    Verena Sandow

  3. , Institute of Ethics, History and, Ludwig-Maximilians-University Munich, Lessingstr. 2, Munich, 80336, Nordrhein-Westfalen, Germany

    Oliver Rauprich

  4. Inst. Medizinische Ethik und, Geschichte der Medizin, Universität Bochum, Markstr. 258a, Bochum, 44799, Germany

    Jochen Vollmann

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Bredenoord, A.L., van Delden, J.J. (2012). Research Ethics in Genomics Research: Feedback of Individual Genetic Data to Research Participants. In: Schildmann, J., Sandow, V., Rauprich, O., Vollmann, J. (eds) Human Medical Research. Springer, Basel. https://doi.org/10.1007/978-3-0348-0390-8_11

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