Philippa Taylor

Are our genes us?

Philippa Taylor was Head of Public Policy at CMF until September 2019 and now works with CARE. She has an MA in Bioethics from St Mary’s University College and a background in policy work on bioethics and family issues.
The views expressed do not necessarily reflect those of CMF.

My father’s genetic influence has always been very much a part of who I am. It has shaped the physical way I look; influenced the way I view the world; affected the way I address problem-solving and coloured the way I assess what is important to me. In short it has defined what is essentially, me. I regard my paternal ancestors to be undoubtedly the biggest part of my character, overriding every influence my mother ever exerted over me through her DNA or nurture. I believe that the importance of genetic parenthood far outweighs even the best intentioned legally appointed parenthood.’ (Emphasis author’s).

What is striking about this quote is that it is by a woman who only found out at the age of 50 that she was conceived using donor sperm. Despite not knowing this for 50 years, she nevertheless felt that her identity was almost totally defined by her genetic heritage and not her social parents who brought her up.

This begs the questions ‘why did she not know?’ and ‘should she have been told?’

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.”

Neither of these two women were told about their conception as a child or even young adult. Despite the removal of donor anonymity in this country in 2005, donor-conceived people can only find out about their origins if their social parents tell them and, unfortunately, many parents choose not to do so.  Research suggests that only 10-20% 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.

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

These concerns around disclosure of information to donor-conceived children have been under a welcome spotlight recently, having been pushed under the carpet for far too long.  The Nuffield Council has recently taken it on as a research project and CMF has sent in a detailed response to this.

Having children is not a right but a privilege that brings with it serious responsibilities. CMF has concerns about donor-assisted conception because it introduces a third party – whether anonymously or not – into the procreative relationship and it deliberately separates the biological parents from the social parents. The desire for a child can be so overwhelming that couples do not take the time to consider 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.

However donor conception is legally permitted in the UK and will proceed in some cases, therefore society has a responsibility to do all it can to protect the welfare of those born from donated gametes. Surely, if nothing else, the lessons to be learnt from disclosure of information for adopted children are that children can frequently feel a deep sense of loss if they don’t know about their genetic parent/s, despite having very loving social parents.

There are more practical questions as well.

How important is it 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 require, information about their genetic heritage in order take appropriate precautions for their future health (eg. 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 at age 40. If a donor-conceived person develops a major health problem it will become increasingly untenable deliberately to deny them such crucial information about themselves.

Again, we can learn from adoption procedures where it is recognised that the medical histories of adoptees’ biological parents (especially with respect to inherited diseases) are crucial to any assessment.

Children who are unaware of the medical histories of their biological parents are therefore significantly disadvantaged. And in some cases, secrecy can also disadvantage the donor (if a child develops a heritable genetic disorder that the genetic parent is unaware of).

‘There are big issues around medical treatment. We have had some very sad cases of people opting not to have children because they believed they had inherited a genetic disease such as Huntington’s, only to discover their biological parents were not who they thought they were.’ (states Marilyn Crawshaw, National Adviser to UK Donor Link in The Independent).

Therefore we must ensure that donor-conceived people 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.

Despite all this, social parents often feel disquiet about being open and truthful with children from donation and there are few regulations that ensure that both clinics and parents are open and honest with their children. Parents are still able to withhold information from their donor-conceived child, sometimes forever.

We have suggested a way 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, we have suggested using the information on birth certificates.

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. We have proposed that 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. It will be interesting to see what proposals the Nuffield Council come up with, if any.

If Government, parents and fertility clinics fail to do anything about the disclosure of information on donor conception, we have warned that it is quite likely that it will leave the 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 at adulthood.  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?

Posted by Philippa Taylor
CMF Head of Public Policy



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