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The regulator’s view

Interview
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So we do know from the research out there that it’s damaging for someone to find out later in life or in an uncontrolled way that they were donor conceived. So, long held family secrets that are revealed later in life can have very damaging consequences on the people that are affected. And so our advice is always to try and find ways to talk very early to your child that they were born through donor sperm or donor eggs or donor embryos in some cases. And often people going into that situation have the intension to tell and then find it difficult to do so. Or feel that they have left it to late.
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And the ones that have been most successful or have for whom it has gone well have always talked about it as part of their family story from a very early age so that children can never remember not knowing. I think that is very important. I don’t think that means that people should be made to tell their children. because the important thing is for parents to feel confident about these issues and anybody who is forced to do something is not going to be confident about that situation.
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So again, as a regulator we see its not just a question about making sure that the consent is correct and the information is stored correctly and disclosed correctly by the clinics but that clinics have a conversation with the perspective parents about how they are going to broach those kinds of issues. And most clinics make it mandatory for donors and recipients to have counselling and to talk through the consequences of parenting that way. And we see our role as the regulator to support that, to encourage clinics to have good processes, good support for those people. Not just importantly at the time of treatment but for all the years after that, that family continues to exist.
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As doctors it is not surprising that people often view their-, that doctors often view their patients as in a very episodic way, as someone that needs help for a moment and when they get better they don’t need their help anymore and they move onto someone else. That is understandable. But with fertility treatment you are making a family. And a family that might need ongoing help and support from you as a, as someone who provides clinical care. So it is quite a different role for a fertility doctor, particularly one offering a donation program. And I think it is our role as the regulator to help them fulfil that duty.

Having looked at the legal side, we now consider some of the concerns that the UK regulator has with regards to gamete donation.

Juliet Tizzard, Director of Strategy at the Human Fertilisation and Embryology Authority (HFEA), here weighs in on some the issues that we have discussed.

First she covers the problems that might arise if parents omit to tell the child about their donor-conceived status. The risk of accidental disclosure, especially when other family members are aware, is a cause for concern.

Next the need for appropriate counselling is highlighted, and the HFEA has issued guidance on how fertility clinics should advice prospective parents about donor conception. The relevant section is copied below:

The centre should tell people who seek treatment with donated gametes or embryos that it is best for any resulting child to be told about their origin early in childhood. There is evidence that finding out suddenly, later in life, about donor origins can be emotionally damaging to children and to family relations.

Finally, Tizzard mentions the unique nature of fertility medicine. Unlike other forms of therapy, fertility treatments create new families and, at the heart of it, create new life. This compels us to think about all the implications of the choices we make as parents, healthcare professionals and society in general.

For discussion: How would you weigh up the different considerations with regards to encouraging as opposed to requiring parents to tell their children they were conceived using donated gametes? Do you think disclosure should be made mandatory? If so, how?

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Making Babies in the 21st Century

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