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Issues of identity and disclosure in donor conception

2 May, 2013

Donor Conception report coverShirley 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.

Download the Nuffield Council on Bioethics report on Donor conception: the ethical aspects of information sharing.

Theresa Taylor

Theresa Taylor is an intern at the Wellcome Trust.

The Nuffield Council on Bioethics is supported by the Wellcome Trust.

4 Comments leave one →
  1. norma permalink
    6 May, 2013 3:08 pm

    What about the eggs that were never donated and were taken without permission from a certain female, and I do not need to say her name. Lengths having gone through to try and conceal the fact for over 20 years and even most recently. Does the prospect of informing the children that sprung from the fertilized eggs that their ‘mother’ had not abandoned them at all, and the parents that raised them paled in comparison of the love the mother could have given them from birth, ever come to mind? The need for Answers to clandestine acts such as these always rises to the surface and are exposed regardless of how deep you may bury the acts. It is best to come forward and face what you have done and accept whatever consequences may arise. Is it not time to turn this page to truth? Who knows, she may just have a forgiving nature. God only knows she can AFFORD to.

    • anna permalink
      9 Jul, 2013 3:55 pm

      The “mother” is the one who gives birth to the child. Just wanted to shed some clarification on your analysis of the process. Your blanket statement about the donor being able to raise the children better is completely ignorant and simply untrue.

      • marilynn permalink
        26 Apr, 2014 7:22 pm

        The mother is the one that gives birth to the child? She pretends to be the mother but she is not maternally related to that child. All she did was gestate the child. It does not make a woman a mother the law needs to change so children are not stolen from their real parents the way they are now. Or sold or given as gifts.

  2. marilynn permalink
    3 Jan, 2014 7:46 am

    On the issue of balancing rights why not just have people who donate held to the same legal obligations as anyone else with offspring and that way their offspring will have the same legal rights as all other people born? Can’t they just have birth records naming their bio parents they are medical records and they are vital records of reproductive health for the government. Having their bio parents named would connect them to their siblings and aid in understanding health issues far better than attributing their births and health problems to the infertile individuals raising them. Why can’t they simply have their bio parents named and then if their bio parents are not going to raise them, have them give them up for adoption in court like everyone else? This is all just an elaborate black market adoption scheme so people can put their names as parents on birth records of other people’s offspring without ever going to court and getting it approved and recorded for the minor’s safety. It’s not really a method of construction its a route to black market adoption and nobody thinks of it that way.

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