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When thinking about the issue of information sharing between people affected by donor conception, we should start with a focus on people and relationships.
Interests and rights
Everyone involved in donor conception has interests in how information is shared. These interests may include:
- the importance placed by many on knowledge of (and contact with) people with whom they have close biological links
- the value placed on having children and bringing them up without undue interference by others
- the privacy associated with personal information
- the importance placed on keeping promises and honouring contracts
These interests are often expressed in terms of ‘rights’. However, by using instead the language of ‘interests’, we can first think about what we know about those interests, and then consider separately whether others have responsibilities to make sure those interests are protected and promoted.
It is not the role of this Working Party to make any judgment as to how important these interests ought to be in any given situation. However, the extent to which these interests are widely shared is relevant to the degree of responsibility that they may create in others. In turn, this is relevant in determining what action may be demanded on the part of public bodies to protect or promote these interests.
These interests arise in the context of relationships, and values that are widely regarded as important in contemporary family relationships in the UK include trust and honesty. ‘Openness’ in families is also valued by many. Openness, however, is not necessarily the same as honesty. In particular, choosing not to disclose private information is not usually considered to be dishonest.
Difficulties arise when talking about openness in donor conception because information may at the same time be both private information about the parents or donor, and information about the donor-conceived person.
Openness about donor conception should not be regarded as valuable in itself, but rather as important in so far as it improves family relationships, and adds to the well-being both of parents and of donor-conceived people.
Where interests come into conflict, the interests of one person in the relationship (whether donor-conceived person, parent or donor) should not automatically be given priority over another. The interests of the different people involved in the relationship always have to be weighed.
In practice, it will fall to the parents of donor-conceived children to weigh the interests in any particular decision regarding disclosure, unless exceptionally there is a serious risk of harm to others. Such power on the part of parents should be exercised responsibly.
The parents of donor-conceived children have a responsibility to:
- avoid, where reasonably possible, any harmful consequences that may follow for their children from the fact that they were donor-conceived
- be willing to consider the evidence about the impact of disclosure on family relationships
- be willing to engage with professional support, when determining what is likely to be best for their child
Donors have a responsibility to:
- think carefully about the consequences for themselves, for their own families, for the recipients of the donated gametes, and for the resulting person
Donor-conceived people have a responsibility to:
- do their best to understand the reasons why their parents chose to create a family through treatment with donated gametes, and why they made the decisions they did about disclosure
If the question of contact arises, each party has a responsibility to be sensitive to the needs of the other, including the potential impact on the other’s family.
Responsibilities of professionals
Health professionals who provide fertility services, and those who regulate these services, also have responsibilities. These include:
- taking account of the welfare of any future child, before fertility treatment is provided
- providing non-judgmental support to prospective parents and potential donors
- taking their role as an ‘information collector/information provider’ seriously
When taking account of the welfare of any future child, professionals may only justifiably refuse treatment if there is a risk of significant harm or neglect to future children. There is not sufficient evidence about the risks of harm to donor-conceived people who do not know they are donor-conceived (and who may or may not find out inadvertently later in life) to justify a refusal to provide treatment to prospective parents who do not propose to inform their child.
The stewardship role of the state
The state has a ‘stewardship’ role in providing conditions that support and enable people in making their choices. In the UK, the state has endorsed and encouraged donor conception as a means of creating a family. It should also be willing to take action to promote the welfare of people affected by donor conception, where this can be achieved without unreasonably interfering with the interests of others. This should include encouraging a social environment where the creation of families through donor conception is seen as unremarkable: as one way among a number of others of building a family.