Shirley Brailey was 12 years old when she found out she was donor conceived. Her father, who she had thought was her biological parent had Huntington’s disease, and her parents needed to let her know she wasn’t genetically susceptible to the condition. “Trying to conceal the fact of donor conception is like trying to conceal a time bomb in the middle of the living room,” she said.
For Brailey having this information opened up a “myriad of little lies” her parents had told. Years later with the help of DNA testing she would discover she had at least 15 half siblings, some of whom only discovered their biological identity mid-way into adult life. This experience has meant that she believes that it should be mandatory that parents tell children they are donor conceived.
This is a view Brailey presented at the recent launch event for the Nuffield Council on Bioethics report Donor conception: the ethical aspects of information sharing. However, the report by the Council’s working group, heralded as being an extremely comprehensive document on the topic, drew a different conclusion.
After hearing evidence from 198 people and consulting the literature, the Council recommended that the state should not intervene to tell donor-conceived people of the circumstances of their conception.
Dr Rhona Knight, a GP and the Chair of the working group, said: “In recent years there has been a culture shift – advice from professionals has gone from the extreme of never telling, to always telling. We think it is usually better for children to be told, by their parents, about their donor conception, and if parents do decide to tell them then earlier is better.”
Around 1,500 children are born each year in the UK following donor-assisted conception treatment in clinics. In 2005, the law regulating donation was changed and donors currently donating can no longer remain anonymous. At age 16, donor-conceived people can seek non-identifying information about their donor, and at 18 they receive identifying information about the donor.
The Nuffield Council inquiry agreed that telling a child early is usually better, but not in all circumstances, for example in certain minority groups or religions. They instead advised that parents are provided the best evidence relating to disclosure. They should be given follow up counseling once the child is a few years old and they may be more ready to face the topic of disclosure. However, representatives from various donor related groups were critical of this approach.
Walter Merricks, parent and co-founder of the Donor Conception Network said this advice would provide a “false comfort” to parents who believed they could fit into this “ill-defined slot for families in particular circumstances”.
“There are a lot of hard decisions in this area. I don’t think the panel has had the courage it needs to make those decisions,” said Tom Ellis, a representative from International Donor Offspring Alliance.
Dr Knight said that families were about groups and relationships not individuals, and different people’s rights needed to be balanced. “What we have tried to do is to balance out the views and interests of all those involved – donor-conceived people, their parents, and donors,” she said. “We don’t agree that the decision of what and when to tell should be taken completely out of parents’ hands.”
Although mandatory disclosure drew the most animated discussion, the report also included a variety of other recommendations.
It found that although parents are often anxious about not having a family history of the donor or more genetic information, this was not as helpful as parents assume. Donors undergo a strict screening process to catch serious genetic diseases, such as cystic fibrosis. But the working group did recommend that a clear mechanism be set up so that donors can share new information about their health should they fall ill.
They also recommended that counseling services be widely available for donor conceived people, donors and parents, particularly at the time where donor and donor conceived are considering meeting.
Theresa Taylor
Theresa Taylor is an intern at the Wellcome Trust.
The Nuffield Council on Bioethics is supported by the Wellcome Trust.
Filed under: Event, Medical Humanities Tagged: Bioethics, Donor conception, Nuffield Council on Bioethics
