Terms of reference

In the context of families created through assisted reproduction using donor gametes, the Working Party will consider the impact of the disclosure/non-disclosure of information about a child’s genetic origins, with particular reference to:

  1. the wide range of stakeholders involved, the complexity of the relationships between them, and the ethical values at stake;
  2. the quality of the evidence currently available as to both the medical and social importance of genetic information in this context;
  3. the support available to both donors and donor-conceived families, for example in connection with future contact; and
  4. the role of the law and professional guidelines in determining the provision of both general and specific information about donors to donor-conceived children and their families, and in intervening in families’ decisions with respect to disclosure.

Explanatory notes

The focus of this project is on the significance of information about genetic origin in the context of families created through assisted reproduction using donor gametes. It is not intended that it should include a wider consideration of ‘what constitutes a family’.

Information about a child’s genetic origins should be understood as information relating to third party ‘collaboration’ in a pregnancy, whether as a gamete donor or surrogate. Such information includes (a) the fact that a person is donor-conceived; (b) non-identifying information about the donor (for example medical information that may be of future relevance to the health of any offspring conceived as a result of the donation); and (c) identifying information that enables the person to contact their donor (such as name and last-known contact details).

Factors the Working Party may wish to take into account in considering the impact of disclosure/non-disclosure of various forms of information may include: the potential for conflict between the interests of different stakeholders, the usefulness of comparisons with other circumstances in which families are formed without full genetic links (such as adoption), and the relevance of cultural diversity. Communication of clinical risks from genetic inheritances, which come to light after donation has taken place will also be pertinent to the disclosure debate.

Previous work

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Nuffield Council on Bioethics
28 Bedford Square
London
WC1B 3JS

bioethics@nuffieldbioethics.org

+44 (0)20 7681 9619

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