Article Text

Download PDFPDF

Is it acceptable to contact an anonymous egg donor to facilitate diagnostic genetic testing for the donor-conceived child?
  1. Rachel Horton1,
  2. Benjamin Bell2,
  3. Angela Fenwick1,
  4. Anneke M Lucassen1
  1. 1 Faculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton, UK
  2. 2 Faculty of Medicine, Southampton Medical School, University of Southampton, Southampton, UK
  1. Correspondence to Professor Anneke M Lucassen, Faculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton so165ya, UK; a.m.lucassen{at}soton.ac.uk

Abstract

We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be a carrier of a ‘harmful inherited condition’. We suggest that we cannot conjecture what her current answer might be if, by participating in clinical genetic testing, she might help reach a diagnosis for the donor-conceived child. At the point that she made choices regarding future contact, it was not yet evident that the interests of the donor-conceived child might be compromised by her answers, as it was not foreseen that the egg donor’s genome might one day have the potential to enable diagnosis for this child. Fertility consent forms tend to be conceptualised as representing incontrovertible historical boundaries, but we argue that rapid evolution in genomic practice means that consent in such cases is better seen as an ongoing and dynamic process. It cannot be possible to compel the donor to aid in the diagnosis of the donor-conceived child, but she should be given the opportunity to do so.

  • ethics
  • genetic screening/testing
  • informed consent
  • genetic information
  • reproductive medicine

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

Statistics from Altmetric.com

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Footnotes

  • RH and BB are joint first authors

  • Contributors RH and BB contributed equally to this paper. RH and BB: drafted the paper. AF and AML: conceptual analysis and critical revision of the paper. AML: concept for the paper.

  • Funding AL’s work is supported by funding from a Wellcome Trust collaborative award 208053/Z/17/Z.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Patient consent for publication Not required.