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Philippa Taylor: Donor-conceived people should have the right to know their genetic parents


Most birth certificates tell the truth of someone’s origins. But not all.

Emma Creswell is one of perhaps 70,000 children who have been born through donor conception and who have birth certificates that do not reflect their genetic parentage. She only found this out by chance. Her case was reported this weekend, after she won a six-year battle to have the name of the man she was brought up to believe was her father removed from her birth certificate, after discovering – during an argument – that he was not her genetic father after all.

Emma still does not know the identity of her genetic father so on her new birth certificate, where his name, occupation and date of birth should be, the boxes are blank.

Emma found out the truth about her ‘father’ when she was a teenager. But many more like her may never find out. Children can only find out about their origins if the parents who brought them up choose to tell them that they were donor conceived.  And many parents of donor-conceived children choose not to tell them about their genetic origins.  It is often kept a secret, so many children still go through life not knowing who their real genetic father is (or mother, for egg donation). And they have birth certificates that do not tell them this.

Rachel Pepa, who also only found out as an adult that the man she always thought was her father was not, says:

I absolutely, categorically think I should have been told as a child – as soon as I was old enough to process the information. It is such a fundamental piece of information to have about yourself – to know who your parents are. Sometimes I get angry thinking about it.”

Despite the removal of donor anonymity in this country in 2005 many parents who use donor egg or sperm hide it from their children. Research suggests that only 10-20 per cent of people who have a child by donor conception have either told that child, or stated that they will at some point tell that child, how he or she was conceived.The law currently preserves the social parents’ ‘decisional privacy’ over and above the child’s right to know their heritage.

But allowing this secrecy simply makes a mockery of the removal of donor anonymity.

However donor-conceived people are increasingly speaking up about their concerns with identity, kinship and secrecy over their genetic parentage. The desire to know our genetic roots is usually very strong, almost instinctive. Yet what we take for granted is all too often denied to them.

Not entirely surprisingly, the desire for a child can be so overwhelming and consuming that couples do not take the time to  consider fully the long-term effects of using donated gametes in terms of family relationships, the pressure it can put on the parents’ relationship or the long-term needs of children.

But surely, if nothing else, the lessons to be learnt from adopted children are that children can frequently feel a deep sense of loss if they don’t know about their genetic parents, despite having very loving social parents.

There are more practical issues as well.

It is important for donor-conceived people to know their medical histories. As society becomes aware of more disorders that have a genetic basis or influence (eg. genetic disorders, certain cancers and glaucoma), donor-conceived people will increasingly want, and/or need, information about their genetic heritage in order take appropriate precautions for their future health (such as regular check-ups and/or dietary or lifestyle changes). For example, a known history of glaucoma in the family qualifies an individual for free screening for this from age 40.

If a donor-conceived person develops a major health problem – or may do so in the future – how tenable is it knowingly to deny them crucial information about themselves?

Again, surely we should learn from adoption procedures where it is recognised that the medical histories of adoptees’ genetic parents (especially with respect to inherited diseases) are crucial to most assessments?

Children who are unaware of the medical histories of their genetic parents are therefore significantly disadvantaged.

Moreover, in some cases, secrecy can also disadvantage the donor, say if a child develops a heritable genetic disorder that the genetic parent is unaware of.

Donor-conceived children should have the choice about whether to find out more about their genetic identity, heritage and to meet their biological parent and sometimes siblings. Not all will wish or choose to do so, but many will.

There are ways that this could be rectified.

Obviously ideally, it should first and foremost be the social parents’ role and responsibility to tell their children about their conception, and not keep them in ignorance.

But if this cannot be guaranteed, birth certificates should tell the truth.

The genetic identity always goes on the birth certificate of adoptees. Normally this is a child’s legal identity as well. If the legal identity is different, however, it is the legal identity that is moved elsewhere. It is not a true ‘birth’ certificate if it only gives cultural or legal information.  Donor-conceived people should have two certificates, one for genetic identity, the other for legal identity, as is the case with adoptees. Others have also proposed this but as yet to little avail.

If Government, parents and fertility clinics fail to do anything about the disclosure of information on donor conception, it is quite possible that it will leave Government (and perhaps even social parents?) open to legal challenges in the future from children who have in effect been denied access to essential information, including medical, about themselves.

It has happened in the past with the campaign to remove donor anonymity so why not a campaign to guarantee disclosure of truth about birth and origins on birth certificates?

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Philippa Taylor
Philippa Taylor
Philippa Taylor is Head of Public Policy at the Christian Medical Fellowship @PhilippaTaylor_

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