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Prenatal Testing for Adult-Onset Conditions: the Position of the National Society of Genetic Counselors

Journal of Genetic Counseling volume 25, pages 1139–1145 (2016)Cite this article

Abstract

Advances in genetic testing and the availability of such testing in pregnancy allows prospective parents to test their future child for adult-onset conditions. This ability raises several complex ethical issues. Prospective parents have reproductive rights to obtain information about their fetus. This information may or may not alter pregnancy management. These rights can be in conflict with the rights of the future individual, who will be denied the right to elect or decline testing. This paper highlights the complexity of these issues, details discussions that went into the National Society of Genetic Counselors (NSGC) Public Policy Task Force’s development of the Prenatal testing for Adult-Onset Conditions position statement adopted in November 2014, and cites relevant literature on this topic through December 2015. Issues addressed include parental rights and autonomy, rights of the future child, the right not to know, possible adverse effects on childhood and the need for genetic counseling. This paper will serve as a reference to genetic counselors and healthcare professionals when faced with this situation in clinical practice.

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Acknowledgments

We thank the NSGC Membership and Board of Directors for the valuable comments and feedback they provided in the formation and revisions of this position statement.

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Authors and Affiliations

  1. Joan H. Marks Graduate Program in Human Genetics, Sarah Lawrence College, NY, USA

    Laura Hercher

  2. Department of Internal Medicine and Department of Human Genetics, University of Michigan, Ann Arbor, MI, 48109, USA

    Wendy R. Uhlmann

  3. Department of Oncology, Littleton Adventist Hospital, Littleton, CO, USA

    Erin P. Hoffman

  4. Informed DNA, Saint Petersburg, FL, USA

    Shanna Gustafson

  5. Personalis Inc, 1330 O’Brien Drive, Menlo Park, CA, 94025, USA

    Kelly M. Chen

Authors
  1. Laura Hercher
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  2. Wendy R. Uhlmann
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  3. Erin P. Hoffman
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  4. Shanna Gustafson
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  5. Kelly M. Chen
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the Public Policy Committee of NSGC

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Correspondence to Kelly M. Chen.

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Conflict of Interest

Authors Laura Hercher, Wendy Uhlmann, Erin Hoffman, Shanna Gustafson, and Kelly Chen declare that they have no conflict of interest.

Animal Studies

No animal studies were carried out by the authors for this article.

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Hercher, L., Uhlmann, W.R., Hoffman, E.P. et al. Prenatal Testing for Adult-Onset Conditions: the Position of the National Society of Genetic Counselors. J Genet Counsel 25, 1139–1145 (2016). https://doi.org/10.1007/s10897-016-9992-3

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  • DOI: https://doi.org/10.1007/s10897-016-9992-3

Keywords

  • Prenatal testing
  • Adult-onset conditions
  • Genetic counseling
  • Reproductive rights
  • Ethical issues
  • The National Society of genetic counselors
  • Position statement