Both poetry and ethics can throw light on rights of donor conceived people

It is unlikely that anyone reading this blog will be unfamiliar with Charlie Gard, the child with severe mitochondrial disease whose parents have been fighting through the courts for the right to take Charlie to America for experimental treatment.  No-one could fail to be moved by the parents’ devotion to their severely ill son.  Until this morning I would have said that there was nothing that could be drawn from this case to help us look more clearly at donor conception families and the vexed question of rights of access to information.  But then I read the article in the Guardian by Ian Kennedy, Emeritus Professor of health Law, Ethics and Policy at University College London and realised that principles enshrined in law to do with the precedence of the welfare and rights of children, have just as much to do with donor conceived children as they do with a very sick child where there is a dispute between parents and doctors about treatment.  As Kennedy says, listening to parents is vital but passion and emotion are not a good basis on which to make decisions about the future of a child.  Of course a case like that of Charlie is heartbreaking but as a society we have to decide if there should be principles and rules to guide everyone when trying to make such hugely difficult decisions.

Whilst reading the article I found myself thinking about the Lebanese/American poet and philosopher Khalil Gibran whose book The Prophet was read by everyone in the 1960s and 70s who wanted to change society.  One line from On Reason and Passion came to mind – For reason, ruling alone, is a force confining; and passion, unattended, is a flame that burns to its own destruction. This plea for a balance between hearts and minds is what everyone involved with baby Charlie have been struggling to achieve and the intervention of American evangelists, the Pope and Donald Trump has done nothing but tip the scales towards emotion, making life even more difficult for parents and hospital staff alike.

Kennedy believes that the first step to using reason to guide decision making is to acknowledge that children do not belong to their parents.  And when I read this my thoughts immediately returned to Gibran.  I have always loved what he had to say about children because it resonated so strongly with my feelings about all my own children.  I’ll quote just the beginning but it is worth reading all the way through –

Your children are not your children.

They are the sons and daughters of Life’s longing for itself.

They come through you but not from you,

And though they are with you, yet they belong not to you.

Kennedy continues by saying that parents do not have rights regarding their children, they have only duties – the principal duty being to act in their children’s best interests.  It is of course children who have rights and any rights parents have exist only to protect their children’s rights.  He goes on to say that parents’ views as to their children’s interests should usually be respected but parents cannot always be the ultimate arbiters of their children’s interests.

For me, what both Kennedy and Gibran are saying is that having children is a privilege that carries huge responsibility.  Parents have a duty to, as much as is possible, put the interests of their children above their own desires and frailties.  I believe strongly that one of the duties of couples and individuals using donor conception to conceive is to acknowledge to themselves (no matter how difficult this is) that at some time in the future their child may wish to have information about and/or contact with the person who contributed their eggs or sperm to help bring them about.  Having recognised this, the parents’ responsibility is then to make every effort to find a known or identifiable donor and tell their child about their beginnings from a very early age.

There may be a right to do ones damnedest to try to have children, should that be the desire, but there is no right to have them and once they are here, the rights are all theirs.

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Respect, autonomy and the right to know one’s origins

One of the founding principles of the Donor Conception Network when it was founded 24 years ago was openness with children about the fact of having been donor conceived.   One of the main reasons for this was respect for our children’s autonomy and right to assign whatever meaning they liked to this information.  As the years have passed the organisation has realised that not only should children be ‘told’ they are donor conceived but ideally they should also have access to information about their genetic background and roots, should they choose to know about these.  DCN argued this case cogently when the government was considering removing anonymity from gamete donors.  With important testimony from donor conceived people and support from some professionals we won the day.

Research to support ‘telling’ and access to genetic origins has been patchy, sparse and recently subject to attacks by people like Guido Pennings who have questioned the empirical basis of such a stance.  He argues that parents should be able to choose to tell or not,  just like any other piece of information, not understanding or recognising that information about genetic heritage is NOT just like any other information.  It may or may not make all the difference to a donor conceived person.  The point is, it is THEY, not the doctor or their parents who should know about it and have choices as to any action they want to take.

Enter Professor Vardit Ravitsky from the Ethics Department of the University of Montreal.  Her writing on this topic is like a clear mountain stream.  It is she, with other colleagues, who wrote the excellent second refutation of the Pennings BioNews piece and the other day I was introduced to the article Autonomous Choice and the Right to Know One’s Genetic Origins on which, I think, the latter article was based.  She argues that the inability to know ones genetic origins may cause some people great harm and others no harm at all, but that all are treated wrongly when they are deprived of the ability to access their genetic origins if they choose to do so.  She says, “People can be wronged without being harmed” and goes on to cite a case where someone’s personal financial information is made public but no harm is done.  However, there had been a risk that harm could be done and the same thing happens when donor conceived people’s right to know is violated.  Donor conceived people’s experiences and needs to know vary hugely – for some there may be a life-long struggle that has caused much psychological harm whilst others perceive the search as something challenging but ultimately fascinating and with the possibility of interesting new relationships.  For all of them, the right to know is grounded, not necessarily in a need for protection from harm but “rather in their autonomy to make choices about what their genetic origins mean to them at different points in their lives.  This choice is linked to fundamental aspects of human existence; our understanding of who we are and how we are connected to others.”

Ravitsky brings a cool, clear eye and some refreshingly unacademic language to the long debated questions on ‘telling’ and access to origins information.  As she says, “The right to know is not about giving DC people information; it is about removing barriers to access, barriers that we (society) created around a process we (society, fertility doctors and regulators) enabled.

Respect is all.  And it is good to know that the path DC Network instinctively followed 24 years ago is now so well supported and articulated so clearly and persuasively by at least a portion of the bio-ethics community.

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Shame and fear of DC parents needs empathy not ridicule

I am aware that I spend a lot of my time preaching to the converted.  I don’t think anyone who subscribes to this blog believes that it is in the interests of children that they are not told about being donor conceived.  I am occasionally a bit provocative and controversial but mostly I feel myself to be in the company of those for whom there are certain agreed bottom lines and being open with children and others is one of them.  But just like I think it is vital to listen to the whole spectrum of views from donor conceived people, I think it is also important to listen to those potential and actual parents who say that they are definitely in the ‘not telling’ camp.  Unless we really listen to what they are saying it is highly unlikely that we are going to be able to influence their attitudes or behaviour.

The people who run and post on the forum Fertility Friends won’t like it (I was chucked off several years ago) but from time to time I check on what they are saying there.  It is a public forum so I’m not doing something I’m not entitled to do.  The culture remains largely one of rather cloying niceness with clampdowns on anyone who expresses a  view that is not accompanied by a disclaimer that ‘of course not everyone feels this way’ and ‘we all have to make our own decisions.’  But just recently, people posting on the Not Telling the Child thread (Tellers strictly not allowed) in the Donor Conception section have become a little bolder and are letting us know some of the reasons why they won’t be ‘telling’.  It is important to note that the vast majority of people who post here do not yet have children so it is perfectly possible that they may change their minds as they feel more secure in their parenting as their children grow older.  But it is also sad to note the number who are requesting ‘management’ to allow them access to what I think of as ‘the Paper Bag on the Head’ section which allows non-tellers to communicate privately, without being exposed to any views that might counter theirs.

So what are they saying –

“My donor is anonymous so why would ‘telling’ help my child?”

“I want my child to have a normal upbringing.  I don’t want them to be seen as different in any way”

“(Telling)…is likely to cause trauma.  I want to protect my child from hurt and confusion.”

Lots of variations on the ‘Love is enough’ theme.  “Why do they need to know?”

“If you borrowed an egg from a neighbour to bake a cake, does that cake belong to them?”

All of these declarations, even the last rather bizarre one, seem to come from a place of fear…fear of a child asking questions that cannot be answered; fear of ‘difference’, fear of  doing something that is so upsetting for a child that they cannot be told about it, invoking shame as well; fear of rejection by the child and/or family and society.

It is easy for those of us who know that none of these fears are likely to come about to make light of these anxieties, but they are real enough and counsellors hear them in their consulting rooms every day…if people dare voice them.  Some don’t because of another fear – that of being judged.  It is clear from what is said on the Not Telling thread that non-tellers feel on the back foot, aware that the climate has moved towards openness.  The tone is defensive.

The challenge for those of us working in the donor conception world is to be able to really listen to the anxieties and fears of potential parents and let them know we understand where they are coming from.  Empathy is our most valued tool in reaching hearts and minds full of fear and it is vital that we engage with all potential and actual parents by donor conception because shame and fear are a very poor basis for raising children.


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Pennings is wrong: Telling is in the best interests of donor conceived children

What can I say about Guido Pennings and his insistence that there is no evidence that it is better to tell children that they are donor conceived than not.  There seems to be a perversity about the man that leads me to want to quote the Duchess in Alice’s Adventures in Wonderland...he only does it to annoy because he knows it teases.  Wah, wah, wah.

It is Pennings Commentary in this weeks’ BioNews that has caused such a stir, but his longer original article ‘Disclosure of donor conception, age of disclosure and the well-being of donor offspring’ appeared in the latest edition of Human Reproduction.  This professional journal is behind a subscription wall and therefore mainly only available to academics.  It was, however, noted with dismay by many of these people and a letter objecting to it’s central premises and arguments and signed by 39 international leaders in the field of donor conception research and community (including at least one donor conceived person) will be printed in the next edition.  Pennings knew this and I can’t help feeling that he deliberately sought publicity for his views in the more widely accessible BioNews before this letter was printed.

I have seen the original article and am fascinated that he sets out to find out whether there is evidence to show that disclosure of donor conception is in the best interests of donor offspring, but then completely and without shame immediately dismisses any deontological arguments such as ‘it is wrong to lie’ or ‘the child has a right to know’.   These propositions are fundamental to a values based and Human Rights approach that is completely appropriate to enquiry in a field such as this and should always be part of of what informs policy and practice.  But no, Pennings wants empirical evidence and will be not be satisfied until he has it.  What he does not make clear is that the research evidence concerning the impact of disclosure and age of disclosure on DC people is very limited in terms of numbers and range of participants, numbers of research teams working in this field and methodologies used.  There are, to date, no large-scale research studies.  Despite this, Pennings, through choosing selected studies, decides that there is sufficient evidence to make claims based upon it.  He also of course provides no evidence  to show that ‘not-telling’ is in the best interests of children.

The forthcoming letter to Human Reproduction will set out the academic/research arguments against Pennings claims much more clearly than I am able to do.  As a mother of DC adults and a counsellor, what I completely fail to understand is why Pennings seems to need to contradict and attempt to undermine what is so obviously good parenting advice, supported by adoption theory, practice and experience and indeed by research on secrets in families. In addition, child development experts have long shown that it is possible to talk about anything to children if the language and concepts used are age appropriate. Keeping secret the fact of a child’s biological origin and allowing them to assume a genetic connection when it is untrue seems to be a very poor basis for the trust, security and warm relationships that should be the basis of good-enough parenting.   Keeping secrets as big as this take up emotional energy in the life of a family.  When children start to ask, as they all do, about similarities and differences between them and their parents they will notice when the answers are evasive or mum and dad exchange glances and change the subject.  A child will know that there is something going on and that it has to do with them.  A sensitive child may blame themselves and worry about what it all means.  Bizarrely in the Human Reproduction article Pennings seems to suggest that counsellors should perhaps be coaching parents in how to manage their children’s questions when they have decided not to tell.  Whilst I deplore any counsellor who feels it is their moral duty to make sure that parents are going to ‘tell’, suggesting that they teach parents to lie is extraordinary.

Not-telling so often comes from a place of shame or fear.  Good counselling can help potential and actual parents to explore these feelings sensitively and hopefully begin to understand what being donor conceived might feel like from a child/older offspring’s point of view.  It is of course up to parents to make their own decisions after this but it is so very sad to think of a child being brought up by parents who feel shame about the way their child came into the world.  It is hard to think that this would not have an impact on family relationships.

Pennings does not accept that children’s needs and rights trump those of parents, whom he believes should be able to make the decision not to ‘tell’ in the same way as they make other decisions in their children’s lives.  What he did not acknowledge in either the BioNews piece or in Human Reproduction is the modern impossibility of keeping the secret.  DNA testing is changing the donor conception world for ever and everyone using donated gametes to create their family needs to understand this.  How very much better that parents should explain genetic origins from a very young age than someone should find out accidentally because they were contacted by a half-sibling or through taking a test for genealogical purposes.

It is unlikely that we will have the kind of empirical evidence that Pennings requires about the value of ‘telling’ for some years yet – we may never have it – but that should not deter all those involved with potential and actual donor conception families from listening to parents, understanding their fears and concerns and gently supporting them in finding ways to ‘tell’ that are right for their family.

What is annoying is that Pennings, having stirred up a hornets nest, is almost certainly sitting in his ivory tower in Ghent with a Cheshire Cat smile on his face enjoying all the attention.

Link to piece in BioNews – worth reading for the comments alone.  Watch next week for responses.

Update at 31.05.17 See Comment in BioNews by Eric Blyth et al in response to the Pennings piece.

Three letters challenging Pennings approach to the research on ‘telling’ have now been published in Human Reproduction plus a rather bad tempered and ill-informed response by Pennings himself.

Update at 5th June 2017:  Another excellent critique of Pennings in BioNews

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We need new words for new kinds of relatedness

I am inspired to write today by the erudite Andrew Solomon whose article in the Guardian on Monday wondered just why it is that we are still trying to shoehorn modern family relationships into a language lexicon that limits us to traditional and binary roles. He reflects that in only a very few decades we have managed to develop and incorporate into everyday life new words that encompass our electronic and technological age, but that when it comes to personal relationships we rarely get beyond adding the odd ‘step’ or ‘half’ to indicate that someone in the family may not be fully genetically related.

Solomon gives several examples, including that of his own quite complicated family arrangement where it currently takes several paragraphs to explain the different relationships and responsibilities, where others are always trying to fit the relationships into a conventional mould.  As a gay man, he and his partner are often asked,”Who is the real father?”, meaning the genetic father or if the surrogate mother they used is ‘like an aunt’.

It is not conventional families with traditional mother and father roles that Solomon is attacking – he acknowledges that they can work well – but it is the binary restrictions that these roles impose.  He also believes there is a tyranny of biological relatedness (and I know I will upset some of my readers here).  As Solomon says, why should we presume that children are better off with their biological parents than anyone else?  Some children have biological parents who do not love them and are not competent to raise them.  This is an age old problem but the default position in societal and political discourse seems to be that that the nuclear family is the ‘ideal’ unit in which children should be raised.  There seems to be lacking a bravery to declare publicly that other arrangements can work perfectly well too.  Solomon ends his article by saying, “We need to acknowledge that families come in multiple shapes and sizes, that love is not a finite asset, and that caregiving involves more than a genetic imperative.”  I for one am persuaded.  Do read the article.  It’s really thought provoking even if you disagree with the propositions.

And on the subject of language, in addition to the recent abandonment of ‘diblings’ as a term for half-siblings, DC Network is considering beginning to use in publications for young children the terms ‘donor man’ and ‘donor lady’ for sperm and egg donors and substituting the word ‘seed’ for ‘sperm’.   The former changes are because the term ‘donor’ by itself is not understood by children’s peers (it is often transformed into donut) and also because it is friendlier and indicates clearly that the donor is a real man or woman.  I am personally less supportive of the ‘sperm to seed’ change, but I do know that many parents are anxious about their children using the term at school and being thought to have age-inappropriate sexual knowledge.  I’d be interested to know what you think.


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Updated guidance on ‘telling’ for parents of donor conceived adults

It has taken a long time to complete but I am pleased to say that the updated Telling and Talking 17+ booklet is now available from DC Network.  It took so long because I wanted to go back and talk to some of the families that my husband and I have helped prepare to ‘tell’ their adult children over the last few years.  Not only talk to the parents but to their offspring as well.  It was a fascinating and very moving experience and the stories of five families are woven into the text.  I also spoke at length to an older donor conceived adult who discovered her origins when she took a DNA test for genealogical history reasons only to unexpectedly uncover an explosive family secret.  Recent UK research with donor conceived adults which will be the subject of forthcoming articles, was also made available to me.  With all this additional material I hope I have been able to produce a document that will encourage and support parents of adult DC people to ‘tell’ their children, whilst at the same time being true to the wide range of responses and feelings reported by DC people who have found out about their origins as adults.  It’s a balancing act but no punches are pulled.

As a taster, here are the Final Thoughts at the end of the booklet.  You might want to keep in mind that the intended reader is a parent or parents who have yet to ‘tell’ their adult child.

“Making the decision that your adult child should have the information about how they came into your family has probably taken you beyond where you would usually feel comfortable emotionally. None of us likes to be in this place for very long. It is impossible to say how your individual child will take the news but DC Network does not know of any donor conceived people who would have preferred not to know.

This booklet has focused a lot on loss. This is because acknowledgement of loss is an important step in the process of re-assessing the decision you took so long ago. Deciding that secrecy may no longer be in the interest of your child or any of you is a big step. Hearing the truth may cause your children to feel an acute sense of loss themselves. Loss of what they always assumed to be true, loss of trust and for some, loss of genetic relatives. That this is so should not sway you from trying to tell the truth about their origins as best you can. The message from the families I went back to talk to was that taking that stomach churning leap and ‘telling’ was absolutely worth it. Parents felt supported by the preparation they had sought and hugely relieved that they did not have to live with the secret any longer. Offspring were mostly very respectful of their parents for having prepared themselves so well and compassionate about the agony they had felt about keeping the secret for so long. There was relief at the explanation of differences between parents and children or siblings (although these exist in genetically connected families as well) and pleasure all round in being able to talk openly about family characteristics and what features and traits might or might not have come from the donor.

As with all family stories, in the end it is not so much about what has happened but the way we are able to make sense of it that leads to being able to integrate it into part of who we are. If the story you tell your child is coherent and rings true (probably because of the emotion that accompanies it) it will be much easier for your child to take in and sooner or later see your perspective, alongside managing their own feelings.

Putting your children’s feelings first is of course not always easy. Right at

the beginning and as time passes your buttons are likely to be pushed by memories and issues your children might raise and need you to respond to. This can stir up old feelings of sadness, uncertainty and fear. Such feelings are absolutely normal and part of parenting (which as you will know does not stop once your children are adults). But they do need managing and this means facing and dealing with them rather than pushing them deep down inside and trying to ignore them. Be kind to yourselves. You have taken an enormous step by ‘telling’. Continuing to acknowledge things you could have done better in the past can be helpful, listening to your children’s feelings is more than valuable, but getting help and support for yourself is also important. Talking with your partner or a counsellor or finding a close confidante as Philippa did, can help sort out the things you need to face and deal with and what your child now really needs to do on their own.

Feelings of loss or confusion can come and go over the weeks, months and years for your children as well as for you. Sometimes they may feel fine and at other times they may not. Donor conceived adults may need independent counselling – somewhere they can express themselves completely honestly and confidentially – either in the first weeks after being told or sometime down the line. Your support of their need for this is likely to be welcomed.

Deciding to ‘tell’ is not without risk or anxiety, but many worthwhile things in life involve some risk-taking. After all, we grow as people as a result of making courageous choices. There is much to gain for everyone.”

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Time for UK fertility clinics to Step Up

Last week I attended Progress Educational Trust’s evening debate about Add-Ons in fertility treatment.  These are the mostly unproven additions to treatment protocols like intralipids, assisted hatching, endometrial scratch and many others.  It was a fascinating evening in many ways, not least watching the tensions rise between clinicians as those working in the NHS challenged their private sector colleagues on both the ethics of offering scientifically unproven treatments and the large amounts of money that are charged for them.

I had gone to the event because PET debates are always worth while and I knew little about the subject.  It’s not something that comes up when I talk with people hoping to become parents by donor conception but I know that they are likely to be struggling with whether or not to seek one or more of these Add-Ons, particularly if they have had many unsuccessful cycles of treatment.  As pointed out by Sally Cheshire, Chair of the HFEA, success rates for IVF (with or without a donor) have now reached a plateau that is hard to see beyond and desperate potential parents are vulnerable to exploitation of the promises held out by adding that ‘magic something’ to the mix that will make a treatment work for them.

Both Adam Balen from the NHS unit in Leeds and Simon Fishel, founder of the private CARE group of clinics, drew attention to the fertility sector as being a very fast moving and innovative one.  ICSI (intra-cytoplasmic sperm injection), for example, was discovered accidentally and began to be used clinically without any real trials.  It has given very many men the opportunity to become genetic fathers but follow up studies of children conceived this way are beginning to show fertility problems for boys.  Fishel noted that many of the treatments and protocols in standard use today (including IVF itself) were red-flagged and seen as unethical when first introduced.  He claimed that “it was not easy to acquire evidence” and that these “unevidenced breakthroughs” have brought about the relatively high success rates we have today.  He cited Holland as being a country that only uses evidence based medicine in fertility treatments and has much lower success rates as a result.

I am not going to expand on how the evening progressed as that is not my main purpose here but suffice to say it unsurprisingly turned out that money was the bottom line – shortage of funds for research (fertility treatments not being seen as sufficiently serious by funders) and the huge sums being charged by some clinics for unproven Add-Ons.  If you want to read more about the event, PET will be producing their own summary and I highly recommend their free on-line publication Bio-News. Also the new HFEA website (up shortly) which will give ‘traffic-light’ guidance to patients about Add-Ons.

I really wasn’t  there for donor conception purposes, except that as the evening wore on I was struck more and more forcibly by how some medics find it convenient to put aside evidenced based medicine and their own gold standard, randomised controlled trials, when it suits their purpose (and pocket).  I cannot recall how many times those of us in the donor conception world have tried to convince fertility doctors of the importance of ending anonymity for donors or that early ‘telling’ is best for families and children, only to be condescendingly asked ‘where is the evidence for this?’  Explanations about secrecy over the years having made decent research very difficult or lack of funding for something as ‘niche’ as the well-being of donor conception families, are tossed aside as they assert their status as doctors who only take notice of evidence-based research.  In addition, several times during the evening panellists talked about the importance of following up children conceived via ART because ‘we have a duty of care to the families of patients.’   I suspect that sadly this duty of care only refers to possible consequences of medical procedures rather than taking into account how a child might feel about not being able to find out information about their donor because the clinic had referred their mother for treatment abroad.  It remains a scandal that UK clinics do this too often without explaining the differences for the child between being conceived inside and outside the UK.

Fertility doctors are not bad people but, as Raj Mather from St. Mary’s, Manchester said, there is a culture in every clinic that is set by the owners or senior clinicians and this influences the way that all staff, including doctors, work.  He implied and I am translating: If the bottom line is money then what is offered to patients will be influenced by this.  I also believe that if the prevailing culture is simply on making babies  (as well as making money) and not on the psycho-social well-being of future children, then we are all poorer for it.

As Sally Cheshire said, STEP UP, FERTILITY CLINICS.

Link to Bio-News summary of the event Add Ons: Do They Add Up

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