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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Come on Archers, when is Henry going to be ‘told’

Once again The Archers (sorry overseas readers, see explanation below) is tackling the topic of miscarriage.  In 2014 it was Ruth Archer with a baby conceived at age 46.  This time it is Kirsty, left-at-the-altar but nevertheless pregnant by ex-fiance Tom, who loses her baby in the second trimester.  The storyline beautifully follows the heartbreak and devastation of both Kirsty and Tom and how the ripples of sadness are felt by both families.  Miscarriage is an event that is often brushed aside with an assumption that there is little to grieve for as the child had not yet had a life to mourn, but as Kirsty and Tom’s reactions show, the loss of hopes and dreams, of ‘what might have been’ are very hard to deal with.   This baby had been very real and important for both of them, despite it having been unplanned, and particularly in their slightly unconventional circumstances, where there may not be a chance of another pregnancy.

So The Archers is handling this twist in it’s long running saga very well.  What we need now is the same sensitive attention paid to letting six year old Henry know that he is donor conceived.   It is another complex situation as Henry was conceived at a clinic by donor sperm when his mum Helen (Tom’s sister) was a solo mum.  She subsequently married the coercive and controlling Rob who when he finally departed for America (long, long, long story) told Henry that he was not his ‘real’ father.  For Henry, Rob was the only dad he had ever known, so he was very upset and has understandably been ‘acting-up’ as a result.   The question is, when is Henry going to be told the truth about his beginnings.

I have written to The Archers new editor Huw Kennair-Jones explaining how important it is that the script-writers and editors get this right as it will be setting the tone for every donor conception family in the UK where parents have yet to ‘tell’ their children (yes, The Archers is that influential).  I have explained about the importance of starting to tell when children are young and that it is entirely possible to do this in a way that is appropriate for their age.  I have of course told him about the resources that DC Network offer to support the telling.   Slightly to my surprise I had a swift response thanking me for my interest and for letting them know of the availability of support with this story-line.  All I can do now is wait and hope that the Archers team will take up the offer.  If anyone else feels like adding their voice to the call for Henry to be ‘told’, the email is or there are various Archers feedback and Facebook pages etc.

Watch this space or tune in…

For overseas readers: The Archers is a v e r y long running radio soap opera ostensibly about farming families that takes place at 7pm for a quarter of an hour six nights a week. EVERYONE in the UK knows about The Archers, even if they don’t listen to it, or won’t own up to listening to it.

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What parents of un-told DC adults need to know

I have just finished the first draft of a mostly re-written updating of the booklet Telling and Talking 17+.  This is intended for parents of donor conceived adults to support and help them tell their ‘children’ in the best way possible.  As I wrote the original eleven years ago it is not surprising that a lot needed changing – in particular the section on Searching for Genetic Connections.

Getting the tone of the text right has been tricky.  It needs to be upbeat and positive enough to encourage parents to actually ‘tell’ but it also needs to let them know that their adult children may respond in a variety of ways, few of them easy to deal with.  There will definitely be shock but also sometimes disbelief or even an element of relief as things that have puzzled them over the years are suddenly explained.  As Simon said, “I felt a tidal wave of relief” on hearing that his dad was not his biological father.  He had always felt disconnected from his dad and his side of the family and this had been a source of discomfort to him as he couldn’t understand why.  Interestingly enough Simon was alone in the eight donor conceived adults I spoke to from five families where my husband and I had spent time helping them prepare to tell, who had any inkling that their dad was not genetically linked to them.  All the others were completely taken aback but when they had recovered from the initial shock they all had compassion for their parents; for what they had been through earlier in life and for the agony of keeping the secret for so long.  Fascinatingly, all, except for Simon, thought that they had been told at the right age (between 19 and 37).  Simon was 40 when he had the news.

I wrote in a post on 2nd December last year about the conversations I had been having with these late-told adults so I will not repeat myself here, except to say that Ken Daniels from New Zealand has also been coming across a number of late-told adults who felt that their identity had not been threatened as a result of being ‘told’.  They too came from warm, loving and intact families similar to those whose preparation for telling Walter and I supported in the UK.  Ken’s research on this topic will be published later this year.

However, I was reminded on a Facebook group the other day, that there are DC adults from such loving homes who don’t feel as benignly about donor conception as those I spoke with.  They are often those who were ‘told’ early, seemed to feel comfortable and then, as adults, have changed their minds for a number of reasons.  Building into the booklet the variety of first responses and then those that may appear as the years pass, has been one of the challenges.  Another has been encouraging parents to continue the conversation.  They cannot get away with ‘telling’ and then think they have done their bit and don’t need to say any more.  Two adults, Gemma and Linda, are very clear that keeping the lines of communication open is very important.  Also the sharing of the information with ALL the family so that DC adults are able to be as open or private as they choose about their conception, without being constrained by one side of the family not knowing.   I have certainly let parents know that the vast majority of DC adults, early or late-told, have curiosity about their genetic roots and links and that they may well search.  If they feel that parents are likely to be hurt by this behaviour they will keep the activity secret.  As secrets in the family are the last thing that needs perpetuating, the message to parents is to let their children know that they understand their curiosity and will not take searching as a rejection of them.  Of course a DC person may feel that they want to search privately and that is their privilege as an adult, but there is a fine line between personal privacy and keeping searching secret out of fear or as a sort of punishment to parents.

The largest new section in the booklet is of course about the advent of DNA testing.  It is in fact this revolution that sparked the urgent re-writing of the booklet as copies of T & T 17+ have been selling in far larger numbers this last year than in the previous ten years.  We can only assume this is in response to anxieties from parents about DNA testing.

There is no point in frightening parents of the possible consequences of ‘telling’.  What we all want is for them to do it.  But they need to deal with their fears and demons first and this means possibly re-visiting painful feelings and working through them to a point where they can put the needs of their adult children first, listening and responding in ways that that are not defensive or overly emotional.  That means preparation.

Philippa’s angst about holding the secret of her daughter Lucy’s conception for 37 years was palpable when I spoke to her on the phone. She found the enormity of what she had to say to Lucy unbearably painful.  This is part of what she wrote to me afterwards –

‘Thanks entirely to your wonderful support and preparation – the preparation was crucial – I was able to be very steady and positive, having rehearsed what I was going to say out loud in the car, and memorised the seven points I wanted to make.”

The new Telling and Talking 17+ booklet should be available from DC Network by April.

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Genetics as we live them

It is a reflection of how full life is at the moment that I have not blogged since the beginning of the month and that it has taken me until Thursday to draw to your attention to the thought provoking article by Alice Jolly on the front page of last Saturday’s family section of the Guardian

Alice, a DC Network member, has a daughter Hope, by egg donation and surrogacy.  She is a writer and in some ways the article could be seen as publicity for her book Dead Babies and Seaside Towns, but in fact it is much, much more than that.  Alice was prompted into thinking about what genetic connections in families meant to her and might mean to her daughter, by a comment from a friend who also has a child by egg donation.  The friend had met with the mother of a *dibling of her daughter and this meeting had been a success, so she asked Alice if she intended to seek out diblings for Hope as well.  Alice and her husband feel more cautious about making these connections but the question set off a train of thought in Alice’s head.  When their surrogate was pregnant with Hope, Alice thought about and researched genetic connections.  It wasn’t the science that interested her but, as she puts it, “genetics as we live it.”  She went on to say, “What soon became clear is that genetics matter less than what we think about genetics.”  As a writer Alice immediately saw this as a narrative.  She is useless at maths because her mother is useless at maths, but, as Jolly goes on to say, in physical appearance and just about everything else she is completely different to her mother.  We use these comparisons as markers of familial connection but they might equally be the result of environmental influences or coincidence.  We give them the meaning that fits with the story we want to tell ourselves.

Alice is swift to say that just because lived genetics are nothing more than narrative does not mean that they are of no importance and goes on to quote an adopted friend who spent years in therapy as a result of feeling she was missing the first pages of her life.  Alice and her husband have made sure that Hope will be able to know both her egg donor and surrogate mother in the future if this proves important to her, but it may also be that she is like a like a second adopted person quoted who, when offered his adoption papers by his mother, chucked them on the fire saying he really didn’t want to know.

Jolly herself has always felt like a cuckoo in the nest in her family but had her sense of displacement put to rest by discovering, in a big house move from urban Brussels to rural Gloucestershire, that she could be whoever she wanted to be and this was very freeing.  She poses the question that the current obsession, as a nation and as individuals, with “who we really are” is something of a toxic dead-end.  As she says, we are never just one thing or another.  “The unpleasant fact is that obsession with identity is finally self-indulgent… is never a good idea to drive using only the rear-view mirror.”

“Focusing on identity can limit and constrain.  Who cares what we are?  Is is not more interesting to consider what we might become?”

I think she’s on to something.  Do read the full article.

*Diblings are genetic half-siblings raised in a different family or children in the family of the donor.

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