The Nuffield Council on Bioethics, a well-respected independent body that looks at ethical issues in medicine, has reviewed the information needs of families involved in egg, sperm and embryo donation. Their report acknowledges the importance and value of donors.
Donation is important throughout a donor’s life, rather than something donors do and then forget: it’s a significant decision with lifelong implications. The report balances the interests of parents, donor-conceived people and donors, making recommendations on how these interests should be managed.
They recommend offering an easy way for donors to update the information held by the HFEA at any time in later life. This is partly because future medical advances or later health problems might uncover issues that donors would like to share with parents and donor-conceived people. If donor-conceived people discover an inheritable health problem, they also should be able to pass that news back to the donor.
Parents and donor-conceived people really appreciate the stories donors share about their life and what kind of person they are. At Altrui we always ask our donors to write something about themselves that potential parents can read before treatment starts (Egg Donor Information) – this can be the basis of the pen portrait. Even so, the pen portrait that donors write when they donate is just a snapshot at that point in time, and it may not reflect what their life is like years later. Donors may like to update it and this should be made easy to do.
Some donors and parents prefer to stay anonymous to each other at the time of the donation, while others are happy to have some contact while the donor-conceived person is still a child. The Council recommends looking into the possibility of early contact and information exchange for donors and parents who would like it.
Considering the wider family
The Council recognises that the donor’s family may be important in any decision to donate, so it is right for donors to consider them before donating. Donors’ partners may be uncomfortable with donation, or parents might feel quite strongly about the prospect of having grandchildren they don’t know, whilst donors’ children may have mixed feelings about meeting or having half siblings.
Donors may be unsure at first how to tell their family, what to say and how they might react. The Council recommends that counselling is offered before any treatment starts and then after treatment if requested, taking their partner if they have one. This will help donors to think through and discuss what their family might need at different stages of life.
Support with contact
Because donor-conceived people have the right to contact their donor when they reach 18, it is recommended that the government should make support available by setting up an intermediary organisation. This would give support to, and mediate between, donors and donor-conceived people who would like to make contact, to help ensure that contact is a positive experience.
The Council is not linked to the government or the HFEA, but they are well respected so their report carries weight. The recommendations will be considered by the HFEA’s National Donation Strategy Group, which is looking at ways to raise awareness of donation and improve donor care. The NDSG will see how these ideas can be implemented so the experience of donor conception is better for everyone.
At Altrui we really care about how our donors are treated. We’re happy to see such a prominent group show appreciation for donors’ generosity and take steps to improve donor care.
To see the full report: Donor Conception: ethical aspects of information sharing