Fall leaves

Each year in the UK over a thousand children are conceived using donor tissue. Many parents find it hard to tell their children that they were donor conceived. Bioethicist John Appleby, from Cambridge University’s Centre for Family Research, is looking at some of the ethical questions surrounding disclosure.

Trust is very important to young people and loss of trust in an aspect of a relationship can have a knock-on effect on other aspects.

John Appleby

Jiten was 13 years old when his mother told him that he had been conceived with donor sperm. The man Jiten had always thought was his father, and had lived with Jiten and his mother until he was five, was not his genetic father. He says: “I remember running downstairs to talk to my step-dad. It was a relief as I really didn’t get on with the man I’d seen as my dad – and I’d always got on brilliantly with my step-dad.”

Families are changing, not just as a result of a breakdown of conventional family structures but also because of advances in assisted reproductive technologies. No-one knows exactly how many children born in the UK each year are conceived using donated sperm, eggs or embryos - but in 2009 the Human Fertilisation and Embryology Authority (HFEA) put the figure at 1,756.

Donation allows many thousands of people experiencing fertility problems to become parents. However, the conception of children through assisted reproductive technologies brings into play a raft of tricky ethical issues, the foremost of which is the question of disclosure.

“Should children be told that they were conceived using donated reproductive tissue?  It might seem like a simple question, and the obvious answer for some may be yes, but it’s one that many parents find much harder to cope with in reality than in theory,” says John Appleby, a researcher with the Centre for Family Research, University of Cambridge, who is looking at the ethical considerations of disclosure.

“Most parents of donor conceived children face the dilemma of whether, when and how to tell their children about their genetic origins. I say most because, for example in the case of same-sex couples and single parents, the child may well seek answers to obvious questions about their conception though that doesn’t mean that disclosure is an easy task. For many parents, if and when to begin to  tell a child that he or she has been conceived with the help of donated tissue is a real dilemma. Every family is different and families are not isolated units but part of wider communities.”

In his research, Appleby, who has a background in philosophy, has focused on the ethical questions that underlie the matter of disclosure, set against the legal and policy landscape in the UK, with a view to creating a framework for discussion.

Legislation took effect on April 1 2005, which allowed anyone conceived with donated tissue after that date to have, at the age of 18, the right to access information about the identity of their donor via records held by the UK’s Human Fertilisation and Embryology Authority (HFEA).

Not until 2023 will it begin to be apparent how many donor-conceived young people might seek out identifying information about their donors from the HFEA.  If adoption law is any guide, then the numbers will not be insignificant. Jiten, who is 22, says that not having the right to information about his genetic father doesn’t bother him – although he’d be “curious enough to find out” if he could.

As the legislation stands, young people will not know that they have been donor conceived unless they have been told – and only those with this knowledge will have any reason seek access to the information held about their donor. This situation puts the onus firmly on the parents to make the decision about disclosure.

Existing research into the impact of disclosure (or non-disclosure) has looked at the psycho-social well-being of families, comparing families who have and have not told their child that he/she was donor conceived. Studies conducted at the Centre for Family Research have revealed no marked differences between families who had not disclosed to their children by early adolescence and those who had.

“Given these findings, you might ask: ‘What’s the point of telling children?’  But that ignores the risk of them finding out by accident, such as overhearing a conversation, and suffering some kind of harm,” says Appleby.

“As researchers we know of a few cases where children found out as teenagers that they were donor conceived and reported experiencing certain harms such as feeling lied to or deceived. On the other hand, we know of others who did not report any harm on discovering that they were donor conceived. All in all, we still need to gather more empirical evidence before any significant judgements can be made about the impact of disclosure, or non-disclosure, on the well-being of individuals later in life.”

To date, Appleby has concentrated on the ways in which disclosure impacts on the issues of trust and identity, among others.  “When I looked at some of the cases in which individuals reported harm from late or accidental disclosure, one of the harms they reported was from losing trust in others,” said Appleby.

“Basically, if their parents had withheld information from them – lied, in fact – they reported experiencing a loss of trust in their parents, and sometimes in other people in their lives as well. In view of this, parents might be advised to opt for an approach which minimised the chance of losing their children’s trust. Trust is very important to young people and loss of trust in an aspect of a relationship can have a knock-on effect on other aspects.”

Television programmes such as the BBC’s Who Do You Think You Are? and ITV’s Long Lost Family tend to focus on the emotional impact of having to re-think identity in the light of new information about their family backgrounds. As Jiten’s experiences illustrate so vividly, every scenario and every family is different. Identity is an aspect of the human condition that can be fundamental to well-being – but each individual is likely to shape their identity using different points of reference, not all of them related directly to genetic ties.

Jiten says: “My experience is made more complex by the fact that my mum and the man I thought was my dad, as well as my genetic dad, are all Indian.  My step-dad is white and I’ve been brought up in a household that blends two cultures. There are certain expectations that go along with being an Indian male and when I was able to separate myself mentally from my first dad, I felt free of these expectations. For me identity is as much to do with culture as genetics. Most importantly, when I was 18 or so, I realised that there was only one person responsible for who I am – and that’s me.”



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