Welcome to my blog!

Welcome to Olivia’s View.

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This blog is my own personal view of donor conception:  the issues, the questions, my reflections on family life, plus comments on media coverage and events: I’m one of the co-founders of DC Network and mother to two sons and a daughter, now adults, conceived both with and without donor help. The views expressed here  are not necessarily those of DC Network.

Meet my family:  Husband Walter, who was the first Chair of DC Network, only stepping down in April 2017. He also used to be on the board of the HFEA;   eldest son Peter from my first marriage, married to Emily and parents to our first lovely grand-daughter; younger son Will married to Rebecca and now in 2018 parents to our new grand-daughter, and daughter ‘Zannah, a talented therapist and healer.  Then there’s Milo, a seriously noisy and annoying but ultimately lovable Siamese cat.

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That difficult word ‘donor’

In my blog of July 8th about the new Telling and Talking book, Continuing the Conversation I referred to introducing a new way (for parents) of thinking about the word ‘donor’.  So many of us think and use this term with reference to ‘our children’s donor’ when in fact the person providing their gametes was giving them to us, not our children.  Some fascinating research from the Morgan Centre at the University of Manchester* (in the UK) has very recently shown that both egg and sperm donors in the UK often feel an affinity with the recipients of their gametes.  They definitely do not think of themselves as parents.

As a taster of the new booklet, here is one of the sections on Terminology.  For some DC adults it may feel that I haven’t gone far enough but please remember that the people being addressed in this booklet are parents.  Some of them may not have come across these ideas before and a gentle introduction is likely to achieve more than language that feels judgemental of their choices.

Terminology

It is likely that you have always referred to the man or woman (or both) who contributed their eggs, sperm or embryos to help create your child as the ‘donor’.  As children reach adolescence they may start to try out different language.  Don’t panic… as in so many areas, young people are trying out different ideas and ways of being.   Teenagers, and indeed adults, can struggle with trying to find appropriate terms.  Some young people come up for a while with ‘real mum/dad’.  They might say of the donor: ‘Technically, that’s my dad.’  Or ask ‘Does this mean you’re not my real parent?’  Although many parents dread this question, in DCN’s experience it doesn’t get voiced as often as you might think.  Young people, no matter how they struggle with the language, are unlikely to see the issue as ‘real parent’ vs ‘not real parent’.  It helps a great deal to keep in mind that this question, however phrased, is not a personal attack, but part of your child’s attempt to make sense of the information they have about being donor conceived. Generally young people are not looking for an alternative parent. One response to the use of the word ‘real’ could be something like:

‘That’s an interesting word to use, how did you get to make that connection?’ The end result will be that the story gets re-shaped by the person who is ultimately going to own it.

You might be asked: ‘What made you pick this donor?’  Depending on your circumstances, you could talk about any personal statements or pen portraits, the fact that you trusted the doctor who made the match or personal characteristics of the donor.   If you have more detailed information about your donor than you have given your child so far, this might be the time to ask your child if they want to know more right now. Those with known donors (particularly from within the family or a close friend), often ensure that their child knows about them, even if they don’t understand the connection, from a young age.  If you are in a heterosexual couple and have a known sperm donor, it is important to ensure your child is clear that their mum did not have sex with this person. It might also help to ensure that conversations about characteristics of the donor also includes looking at what traits your child shares with you as a result of you having spent time together whether you are the non-genetic or genetic parent.

Language around donor conception has always been a minefield as we struggle to find new words for new relationships or try to make old ones fit. You might like to think about the term ‘donor’.  We have historically attached ‘the donor’ to the child so that we refer to ‘your donor’ when talking to them.  The truth is however, and this is borne out by the Morgan Centre research with gamete donors (see section on Donors) that the donor(s) gave his or her gametes or embryos to us so that we could become parents, so logically the donor is ours and not that of our child. Our donor(s) is actually our child’s biological parent(s), so perhaps the word ‘donor’ isn’t the right one to use.  However, using the term ‘biological parent’ in a social context can feel unwieldy and formal so ‘donor’ feels like useful shorthand in many circumstances.  Changing how we use the word ‘donor’ seems to be part of a movement away from euphemistic language and towards even greater clarity and openness about donor conception, led by some donor conceived adults.  But there is no orthodoxy here. Whilst all of us need to think about the language we use, it is probably best to let your teenage or adult child find the terms they are happy to own, and remember that these may evolve over time.

Those young people who are interested in their beginnings and want to explore the terminology around donor conception may end-up referring to the donor as their bio-dad or mum.  But many will continue to use the term donor, sometimes inter-mingling it with other terminology, perhaps even a nickname, depending on the context.  Whatever words are used by you or your child it is highly unlikely to be of real significance if the relationships and communication in the family are good, and if they are, then all is likely to be well.

Where surrogacy has been used, donor conception is almost inevitably part of the picture, unless an embryo created with the gametes of the intending parents has been used.  In traditional surrogacy, the egg of the surrogate is fertilised with sperm from the intending father (so the surrogate is the egg donor).  Gestational surrogacy usually involves a separate egg donor as well as a surrogate. The language used in surrogacy sometimes revolves around referring to the surrogate as the ‘tummy-mummy’ or alternatively using her first name to make it clear that mummy and daddy are the raising parents.  In her interview with Canadian journalist Alison Motluk, 21 year old UK surrogate-born Gee Roberts talks about knowing from a young age that she had two parents but also her ‘tum-mum.’ She now sees her surrogate (who is also her genetic mother) as an “auntie-type figure” or close family friend.

As with other family types, the language you use to describe your surrogate and your egg donor is likely to change as your child grows. It might be that the egg donation part of the story has felt like a minor role compared with that of carrying and giving birth to the child, particularly if you have an on-going relationship with your surrogate. If your egg donor is not also the surrogate, both you and your child might find yourselves wondering about what traits and likenesses she might have contributed, and a discussion about the complexities of the roles of surrogate and egg donor might be helpful.  You might want to revisit together with your child the place in your family life for both the surrogate and the egg donor as your child becomes old enough to have their own views.  

*For information on resources about the Morgan Centre project: www.manchester.ac.uk/egg-and-sperm-donors

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The difficult stuff parents of DC people ignore at their peril

As I write, holed up in the office at the top of the house where Walter and I are living at the moment, some ground-breaking filming is taking place on the ground floor. Parents of donor conceived people, their children of all ages and DC adults are being interviewed about their lives and decisions, hopes and fears, thoughts and feelings. The resulting short films and clips from them, will be shown at DC Network’s workshops (and clips on the website) to help potential and actual parents of DC children to make the best possible decisions about having and raising DC children. The people included in the film are from all family types and have children conceived through all the different kinds of gamete/embryo donation, including surrogacy with egg donation. The difficult stuff will not be avoided.

Exactly what the difficult stuff consists of is succinctly contained in the advice to parents given by the young people I interviewed for Continuing the Conversation (see previous blog) and in the 2020 survey conducted amongst donor conceived adults by the organisation We Are Donor Conceived (WADC) https://www.wearedonorconceived.com/2020-we-are-donor-conceived-survey/

It also happens that Texan counsellor/psychotherapist Jana Rupnow’s latest podcast with four parents from around the English speaking world, also focuses on this hard stuff.  Give it a listen on https://threemakesbaby.podbean.com/e/parents-of-dc-children-talk-about-the-hard-stuft-part-2/

What is interesting is that the difficult questions typically avoided by parents on fertility forums and many Facebook groups are now being openly addressed by both donor conceived people and increasingly parents…and in ways that are making them accessible and almost unavoidable for the majority of potential and actual parents and the general public.  It is breaking through the layers of secrecy that have obscured the losses many donor conceived people feel.  Losses equal to those felt by people bereaved through infertility.

We Are Donor Conceived, thought by parents when it was started in 2016, only as a place where angry, largely American, DC adults went to moan at each other, now has an up to date website addressing a range of topics that every parent should read and in language that does not pull punches but is possible to listen to.  Highlights from the survey include the finding that those people who are told of their origins early do mostly find it easier to integrate the fact of being donor conceived into their sense of who they are…but it definitely does not prevent curiosity about and sometimes the need to search for genetic relatives.  This finding is absolutely endorsed by the mostly British young people I spoke to.

Another example from the WADC survey is that 81% of respondents did not support anonymous donation agreements and 67% believed that the donor’s identity should be available to the DC person from birth.  This finding challenges the vast majority of ‘treatment’ systems around the world and the second figure in particular is very hard for parents to hear, but it was nevertheless discussed intelligently on Jana Rupnow’s podcast.  Known donation is clearly advocated as the most person centred way of undertaking donor conception on the largest of the mixed* Facebook groups I am part of.  Seventy per cent of WADC survey participants believed that they have been harmed by not knowing the donor’s identity and 80% believed they have been harmed by not knowing the donor’s medical history.  I would say that the young people I spoke to, who had all learned of their origins from a very young age, did not feel as strongly as this, and one or two defended anonymity, but they nearly all wondered about their medical history and what the future might hold for them with regard to their health.

Very much endorsed by the British DC people I interviewed, was the finding that if parents seemed not to be comfortable talking about donor conception, then the young person would be unlikely to say how they really feel and might well search for genetic relatives without letting their parents know they were doing so.  No parent wants to hear this but it is very important that we as parents know that our attitude and approach to keeping DC on the agenda is vital for continued good communication in the family.

A WADC finding that was not shared very much by the British young people is that donor conceived people want to form relationships with their donor and siblings.   I interviewed two sets of half-siblings in their late teens and early twenties and they were all clear that these relationships had brought richness into their lives but none of them were very interested in their donor.  For teenagers or those twenty somethings who had yet to search, there was an interest in information about the donor but a much more ambiguous attitude towards making a personal connection.  However, today one of the people being filmed in my house was a woman of 35 who, despite having been ‘told’ from an early age, had been troubled about knowing where she fitted in life until she found her donor via DNA testing two years ago.  She now has a relationship with him and his family and describes herself as ‘content’.  Our daughter, now nearing her mid thirties, has also recently decided to  make a renewed effort to find her donor and half-siblings.  She wants to honour what she has long felt as an unmet need.

How do her dad and I feel about our daughter’s wish to find people she is related to on the donor side?  Certainly not threatened one bit.  Our relationships are strong and the fact that she has confided her needs to us demonstrates this.  We worry a little about her being rejected or being disappointed by what she finds, but otherwise we are 100% behind her.  I would not have predicted thirty-five years ago that we would feel this way now but times have changed. Donor conceived people have been letting us know for a long time that choosing to have a genetic connection to one parent (in single donation) and trying to deny the importance of a genetic connection to the other progenitor by choosing an anonymous donor is simply setting up a future loss for our children.  We must stop pretending that there is nothing different about donor conception.  Our children are our children but they are also inextricably connected to another genetic heritage that is not part of our families, unless of course the donor is a family member.  This is the fundamentally difficult truth that all potential and actual parents need to accept in their hearts and their heads, but the medical regimes that operate the ‘treatments’ mostly fail to prepare people for.  And sometimes, although not always, our children will need to connect with that other side to feel they have reached a place in their life where they can breathe more easily.

This is some of the difficult stuff we all need to think about.

 

*Mixed Facebook groups invite donor conceived adults, siblings, parents and donors to contribute to a conversation about the experiences and ethics of donor conception as perceived from different perspectives.  At best people listen and learn.  At worst they become defensive and sometimes abusive.  The best groups have good guidelines and are intelligently moderated.  

Pre-orders for Continuing the Conversation can be placed here -https://www.dcnetwork.org/products/product/continuing-conversation-talking-young-people-and-adults-12-years-and

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Continuing the DC conversation with teenagers and young adults

Lockdown because of the Covid 19 pandemic has proved the perfect time to write, with my long-term colleague Jane, a booklet for parents of early-told donor conceived children who are now approaching or already in the teenage years.  It is called Continuing the Conversation.  This publication has had a long gestation time, partly because I wanted to interview a good cross-section of DC young people from all family types (and their views and feelings are at the heart of the booklet) but also because I moved house during the research process!  The content covers the developmental changes that take place at this life stage and the ways these might impact on a young person’s thinking and feeling with regard to their beginnings.  There are chapters on secondary school and how teenagers manage their difference in the face of biology lessons revealing the importance of genes and discussions on ethics around assisted conception in religious education lessons; on how parents can help prepare their child for a future where the donors’ known, anonymous or identifiable status will mean differential access to information and in particular helping parents to think about 2023 and beyond when the first cohort of 18 year olds in the UK will have the right to identifying information about their biological father or mother; re-thinking the meaning of genes and how important they might be to different people in the development of an adult identity and of course the revolutionary impact of DNA testing on the donor conception world.  There is also a special chapter for parents who have raised children in same sex or solo parent families as the second partner and/or ‘Dad’ question can make life tricky for children, particularly in the young teenage years.  The thoughts of both young people and parents about making contact with half-siblings and/or a genetic parent are explored.  The always difficult topic of language and terminology is discussed and a new way of thinking about a ‘donor’ is proposed, but this will be the subject of a subsequent blog.

Throughout the booklet Jane and I raise questions that can feel uncomfortable for some parents.  The choice of where they conceived their child and the impact this may have on their adult child’s choices for information or contact, is an example, and the importance of acknowledging the donor as a living human being who may well become known to their child in the future is another.  We emphasise the value that DC people place on parents listening to their feelings and being supportive of their needs, whatever they may be, and are clear with parents that unwillingness to talk about these things is likely to result in their child searching behind their back.

The final chapter is mostly given over to the advice that teenagers and young adults wanted to give to parents.  This question really animated my interviewees and they didn’t hold back!

Final tweaks are now being made to the text, a Resources page added and hopefully the booklet will be published and ready for sale both in pdf and hard formats in early Autumn.  We hope very much that parents will find this a useful tool in supporting their growing children as they mature and find their way in the world as people conceived with the help of a progenitor(s) who is not a raising parent but who may become part of an extended family unit.

Finally, I am hugely indebted to all the young people and parents who gave up time to talk to me in person, on the phone and via email.  Your stories and quotes have made the text rich and alive.  If you contributed you will be receiving a pdf copy of the final booklet.

dcnetwork.org/books

 

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Donor Conception treatment on hold? This could be the time to do some good work

We are living in the strangest of times.  Told to keep our distance from those we love but don’t share a home with as well as stay away from our colleagues and friends.  Told not to leave the place we live in unless it is for a very short list of reasons.  Our minds are full of anxiety, not just for family but also for jobs, for our futures…

Donor conception would seem to come rather low on the list of things to worry about at the moment and if you have already started ‘telling’ your children this is likely to be true.  But if part of your future that is being put on hold includes plans for donor conception procedures either in the UK or abroad, you may be distraught that your hopes for a family are being delayed to an uncertain date in the future.  The HFEA have told all UK fertility clinics to complete the treatment cycles for those women currently mid-treatment but to put on hold for three weeks the start of any further cycles of treatment.  Chair of the HFEA Sally Cheshire, an ex fertility patient herself, has written an open letter to those hoping to cycle soon, saying how sorry she is that this has had to happen but that the decision has been taken on scientific advice. There could of course be further delays after this initial period.  https://www.hfea.gov.uk/about-us/news-and-press-releases/2020-news-and-press-releases/an-open-letter-to-fertility-patients-sally-cheshire-cbe-chair-hfea/

Those of you planning to go abroad will almost certainly have received similar information from your clinics, plus most international flights are cancelled and Spain, a popular destination for egg donation, is under lockdown at the time of writing.

The devastation some of you may be feeling is absolutely understandable.  There is nothing anyone can do to alter the circumstances under which we are all having to live at the moment, but here are some tips, both general and some specific to DC, that might support you through these difficult times and help you to use this time well to prepare for parenting by donor conception.

  • If you feel sad, angry or anything else, let yourself feel the depth of that feeling. Cry, pummel a cushion, have a good scream.  Do whatever is necessary to allow the feeling to come out.  You may be exhausted afterwards but you will feel better.  All feelings are allowed, only actions that hurt yourself or others are not. Keeping feelings bottled up inside never does anyone any good.
  • Try to stay in the moment, living neither in the past or the future. It’s not easy to achieve but worth the effort and can stop the endless what if’s (we’d made up our minds and done that cycle earlier in the year) or catastrophising (we’ll never have a family now).  We know it sounds boring, but slow, deep breathing really can help when you are feeling anxious and upset.
  • Ideally talk with someone who is likely to be able to listen to you without judgement. Everyone is having to deal with difficult stuff at the moment but just having someone listen to what is important for you right now can be very helpful.
  • When you are feeling calmer and hopefully more positive, think how you can use this extra time to help prepare yourself to be a parent by donor conception. Naturally your focus has been on your infertility or reason for using DC (either with or without a partner) and ways in which it might be possible to have your dream of a family come true.  You really, really want a baby.  But the majority of your relationship with the person you conceive, give birth to and raise will be with an older child, teenager or adult.  Now could be the time to think about what that relationship might be like if you decided that openness with them about DC was the right thing to do or you decided to keep the secret.  There is lots of information on DC Network’s website to help you make this very important decision.
  • You might want to talk with your partner (if you have one) or a close friend about what having a child by donor conception means to you. Do you feel the egg/sperm or embryo that is going to help you conceive is just a clump of cells someone would have discarded anyway or are you able to acknowledge that it is a very real person (or people) who have allowed their gametes to be used to help you conceive.  Do you feel it is reasonable that any child you have might want to know about this person or people someday?  How do you think you might feel if you were a donor conceived child/teenager/adult?

All these not necessarily comfortable questions are important to think about before going ahead with a gamete donation procedure and here is a perfect opportunity to really think them through now rather than after a child has been born.  DC Network is a great organisation to support and help you in thinking about them all, no matter where your starting point is.  Email them via the website https://www.dcnetwork.org and someone will get back to you very quickly.

I hope very much that you will be able to resume your journey to a family later in the year when this Covid -19 crisis has passed.  In the meantime be kind to yourself and others around you, make good use of this extra preparation time…and know that DC Network is there for you.

 

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Stories key to making sense of donor conception relationships

It is not by chance that DC Network’s book(s) for young children are called Our Story.  Stories are central to how we see ourselves and make sense of our world.  These books help children to begin to understand the story of their family and how they came to be part of it.  What they don’t do at this stage is explain that genetically they are connected to one and sometimes two other families and that these people will have contributed to the looks, talents and personality that are part of who they are.  But now, thanks to donor numbers in the States and DNA testing worldwide, groups of children (sometimes adults) whose parents have all used the same donor, are making connections and noticing familial similarities and differences.  For those donor conceived people who have known from early on about their beginnings, contact with half-siblings and potentially biological parents, can bring exciting additions to their story.  For those who did not know about their conception with the aid of a third person until later in life, it can feel as if their story has been taken away from them, with all the loss and devastation that can bring.

At a recent ESHRE workshop in Leuven, Belgium, DCN’s Jane Ellis led her talk about her counselling work with recently told donor conceived adults with a quote from the environmentalist George Monbiot – “You cannot take away someone’s story without giving them a new one.”   The searching that often takes place following such a revelation is as much towards the rebuilding of a story, as it is a search for the people involved.

I have long had an interest in attachment theory, although I am very far from being an expert in its application, but I do wonder about the attachment implications for donor conceived people of learning of their origins late and also about how the attachment style of the family they have been raised in influences the way they respond to learning about their conception and the deception that has been practised by their parents.  The ability to tell a coherent life story is made much of in the Adult Attachment Interview.  The impact of having the life story rug pulled from under one’s feet, plus I suspect the WAY in which in happened or was responded to by both parents and DC person themselves, is likely to be influenced by the attachment status of the people concerned.  Research could provide some helpful insights.

Not only are individuals making contact with others conceived from the same donor/bio parent but networks of donor conceived people are coming together and some research into their relationships is beginning to emerge.  It was this, plus a recognition of the need for support/care and counselling of donor conceived people – and indeed potential parents – at different stages of their journey that was behind the ESHRE workshop entitled – Moving On From Individual Connections to Networks: New Challenges in Donor Conception.

We heard from academics, mostly excellent communicators, some practitioners and one donor conceived adult, Maaike, a woman of 30 from The Netherlands who has 72 half-siblings.  They are just one of 23 large groups in this small country.  Luckily The Netherlands has a wonderful organisation FIOM that can act as an intermediary between offspring and donors and donor conceived people.  It was only in 2013 that a law regulating the number of children per donor came into force in this country.  This was fixed at 25 (probably much greater than UK’s 10 families) and 16 is the age at which DC people can ask for identifying information about their donor.  Maaike, told the audience that the sibling group is too large but on a day to day basis it is managed by members of the group, including her, who run Facebook and Whats App groups and facilitate social gatherings.  One or two new ‘halfjes’ join most months and Maaike tells them that “Within this family group you can choose your own friends” sensibly recognising that it is impossible to be close to so many people and that in any family you are bound to get along better with some people than others.  She was very pragmatic about people joining and leaving the group for different reasons.  Meeting half-siblings and her donor has meant a lot to Maaike.  She no longer doubts her roots and enjoys the social contact.  The bridesmaids at her wedding were ‘halfjes’.  In answer to a question from the audience she said that she would not consider using a donor if she and her husband found themselves infertile.

FIOM’s Sophie Bolt spoke about the need for understanding of the dynamics and management of groups; how it was helpful to understand group process as in the Forming, Storming, Norming and Performing theory.  As someone who has learned about group process myself I absolutely value this sort of knowledge but I also thought that Maaike’s friendly and pragmatic approach was refreshing and probably good enough most of the time.

There were many really excellent and fascinating presentations and I’m going to stick with my theme of stories in trying to give you a flavour of some of them.

Rosanna Hertz, author of the excellent book Random Families: Genetic Strangers, Sperm Donor Siblings and the Creation of New Kin, spoke about her research with single women using embryo donation.  She referred to them becoming adept in the artistry of being bricoleurs (Bricolage being a term coined by the social anthropologist Claude Levi-Strauss to embody the bringing together of elements from diverse locations).  Their motherhood narrative emphasises discrimination and determination, changing the conventional narrative in two ways – Firstly, emphasising the importance of their nurturance and their social belonging over genetic ties and secondly, they ‘do’ kinship by talking and behaving as though nurture outweighs nature, whilst paradoxically invoking the importance of genetic relatives as a resource in shaping their children’s identities. Half of the women interviewed by Hertz were unsure if the use of an egg donor would be disclosed to their children, even if friends and family know.  Telling a story that involves two donors seems particularly difficult for single women.

Hertz also spoke about work that she has done with donor connected communities across the US, mostly with parents of young children, largely solo mums, leading the way.  The use of the internet for connection and communication was the subject of the talk, with the meaning and experience for donor sibling networks varying depending on when they were born and how possible linking with others was at that time.  Before 2003 parents did not know that siblings existed (children now in their late teens) but as use of the internet boomed and registries began to be set up, parents increasingly did know about the existence of siblings and some chose to connect, even before their child was born in some cases.  Early, pre age five, connection is becoming more and more common in the US. Being in touch at this age means that a child’s life story becomes inextricably linked with that of their siblings, both as individuals and with the group as a whole.  In some cases the donor has been traced, or made himself known, but his place within these communities seemed tenuous.  It was the women themselves who were benefitting from a safe place to share thoughts and feelings about DC as well as childhood milestones etc. and children seemed to gain validation and trust from the network.

Petra Nordqvist from the University of Manchester brought to the meeting her research into donors and their relationships with their own families and recipients, particularly in this instance known sperm donors and the women who use their services.  I found this presentation rather uncomfortable and on thinking about it I realised that it was because, unusually for research around donor conception, it did not focus on the needs of recipients or children but on the donors themselves and a group of donors often thought of as being a bit on the sleazy side.  Petra was quite clear, however, that whilst some sperm donors advertising their services did seem to be seeking sex, there are others who are altruistic in their intent and that the best arrangements were made when both donor and recipient felt an affinity with each other which she described as a kind of spark or charge of connection. I was however dismayed when in answer to a question from the audience Petra said that known donor arrangements could lead to a situation of great satisfaction for all concerned but sometimes ended in disaster.  This absolutely echoes what I know of these arrangements and when things go wrong it is the children who suffer.  A conclusion that could have been drawn is that stories that adults choose to tell themselves may not necessarily take into account the needs of the people who result from the choices made.

Astrid Indeku from Belgium but now working for FIOM, used as her connecting theme, the Oresund Bridge between Denmark and Sweden (known as The Bridge in the Scandi noir TV series of that name), identifying graphically the need for there to be a care pathway available to all on the donor conception journey at any stage.  Her straightforward and well set out slides led us through the current Dutch system, its provisions and its gaps, allowing us to see clearly that many opportunities for support are currently being missed and many people who may need to ask questions or seek support, like parents or grandparents of recipients and donors, have nothing offered to them at the moment.  Like the analogy of a stone being thrown into water, it is an ever expanding number of people who need to include the fact of donor conception into their stories and guidance in how to do it.  What is needed, concluded Indeku, is continuity of services, co-operation between and within services and quality of care which only comes about through the employment of experienced and empathetic staff and high quality training.

Although there were several more presentations I am going to finish with that of Marilyn Crawshaw, Fellow of the University of York, who is probably the wisest woman I know and certainly one of the most knowledgeable people with regard to the well being of donor conceived people and their families. Her talk was titled Circles of Influence: what are they in counselling with donors and recipients.  As is usual with Marilyn it was oceanic in depth and dense with meaning.  I particularly liked the following slide reproduced here in full –

Secrets have sociological importance, ‘not because they reveal a simple ‘truth’ about family life, but because these secrets are a route into understanding the complex relationship between power, the personal, the cultural and the social.’ (Carol Smart 2011:539)

 There is usually a difference between our actual family (the family we live with) and the idealised family of our imagination (the family we live by).

 ‘Secrets are not simply missing ‘factual accounts’about the family. They are stories created that distort the ‘facts’ in order to provide an account, a display of family that reflects what is perceived to be important in this family (and social) environment’      (Lucy Frith et al 2017:8).

Carol Smart’s quotation rings particularly true.  Infertility brings with it a huge loss of power and control as men and women enter the ‘treatment’ circus, are expected to share the most intimate details of their personal lives and to take on the medically focused culture of ‘fixing it’, often leaving behind their own culture and the social context in which all this takes place. No wonder it is hard to construct true and positive stories around their experiences.  No wonder that they sometimes pass on to their children the “stories that distort the facts” of the Lucy Frith quote.  We all struggle with the family we live with and the family we might like to be.  What is needed for all those involved in the donor conception extended family is access to counselling (as part of a pathway of care) that addresses and listens to both ‘the here and now adult’ and ‘the parent to be’ (Crawshaw).  This is why DC Network’s Preparation for Donor Conception Parenthood workshops deal with people’s sadness and loss first, then their need to talk about their feelings about using donor conception BEFORE asking them to think about the child they might one day have and how the fact of that child’s beginnings can become part of both the adults’ and the child’s story.

Stories are so powerful.  People deserve the best support and care in making and being able to own the truth of stories that are true for both themselves and their children.

 

 

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Donor Conceived Adults Speak Out at UN

Something amazing took place last week in Geneva when a number of donor conceived adults had the opportunity to to speak about their stories at the celebration of 30 years of the UN Convention on the Rights of the Child.  I am copying here Canadian journalist Alison Motluk’s blog that contains testimonies from some of the DC adults involved.  They received a standing ovation.

26.11.19. Full videos and testimonies can be seen here: https://www.donorkinderen.com/united-nations-2019

27.11.19 https://www.youtube.com/watch?v=GEP3ZGPFdeQ&feature=youtu.be&fbclid=IwAR3mnGgf0FEhKEWPLCdCGt0-K8F0SLPH51ImWcn90DCmAoCzd8ysL_fXMQ8

Let’s do better.

Three decades have passed since the UN adopted the Convention on the Rights of the Child. There are 196 signatories to the convention, including every member of the United Nations, apart from the United States. Among its core principles are that the best interests of the child should be considered and that children should not face discrimination.

This week, to mark the 30th anniversary, a three-day conference is taking place in Geneva. The meeting included a session, held earlier today, called “Children’s Rights in the Age of Biotechnology,” in which several donor-conceived people spoke.

They asked us to consider:

What if you know you are donor-conceived but don’t know who your biological parents or siblings are?

What if the government is complicit in keeping your identity a secret — and your birth certificate is a lie?

What if your biological mother or father or sibling has a medical condition you know nothing about?

What if you wonder if you are related to everyone who looks like you or to the person you are dating?

What if you feel like part of a living experiment in which your human rights don’t matter?

What if you have tens or hundreds of siblings?

Below is some of what they shared.

Testimony

My parents wanted a baby, and doctors had a method of providing them with one. They told my parents that nobody needed to know about the method of my conception, least of all me.

My mother’s doctor was a pioneer in the field and received numerous accolades. An industry sprang up from what appeared to simply be the altruistic practice of solving a problem and fulfilling a desire.

Nobody considered the implications of having a child grow up in a culture of shame and secrecy — that I might perceive a sense that things weren’t quite right, that I would feel a need to fit in, to prove my worth, to constantly seek approval and acceptance. Nobody thought to prepare my family for the difficulties we would face and the profound effect it would have.

I found out I was donor-conceived when I was 21 years old, when I read it in my medical file. It was less shocking than you might imagine. It made sense. But I wish my parents had found the courage to tell me themselves.

I wish that my parents, and the doctors who facilitated this, had considered what this would really mean: being deprived of half of my medical history, half of my family history, and of the choice to know my biological parent.

My sense of identity was shattered, and it took twenty years before I could begin the process of piecing it together accurately.

Six days before I turned 40, I found my biological father. Once again, it made sense, and once again, it involved complexity and loss.

What worries me deeply — enough to fly across the world to share these thoughts — is that this is still happening: creating children with the express intention of severing a fundamental biological connection purely for the profit and needs of others.

— Courtney du Toit, age 42, family lawyer, mother of two

*

A birth certificate is a component of a person’s identity. For donor-conceived people who may already be struggling with identity construction issues, having a birth certificate which does not reflect the truth of their genealogy can add to the stress and trauma.

In the Australian state of South Australia, a birth certificate can be legally changed through the courts to correct an error or an omission. I wanted to get my birth certificate changed to reflect a more accurate history. I wanted it to reflect the truth. So rather than have my social dad listed on it, I was seeking to have him removed and have it left blank.

What should have normally been a relatively simple process was not so for me. Because I was donor-conceived, I had to go to court four times before a judgement was made. This involved submitting evidence that made the facts of the case beyond doubt. It also meant representing myself against three lawyers from the Attorney General’s office who were acting on behalf of the Registrar.

Basically the magistrate’s office said she didn’t have the power to do what I was seeking, because the legislation wouldn’t allow her to do it. So I’m stuck in limbo.

Correcting a birth certificate due to an error or omission is allowed for every South Australian citizen with the exception of donor-conceived people. They are the only citizens who cannot rebut paternity. The Attorney General’s office made sure that in this case my birth certificate reflected not only an injustice in the law, but also a lie.

I am left with a document that is better described as a certificate of ownership rather than an accurate birth record. I am envious of my dog who has a more accurate birth certificate than I do.

— Damian Adams, age 45, medical research scientist, father of two

*

I was born with a congenital heart defect called “Tetralogy of Fallot,” which is known to be hereditary in a small percentage of cases. My parents always told me and my doctors that there was no history of heart issues on my paternal side.

At age 54, I discovered that I was donor-conceived. My father was “Mr Anonymous.” Amidst the shock of discovery was the trauma of knowing I had been unwittingly providing an inaccurate medical history all my life. This was incredibly upsetting and scary.

My cardiologist was both horrified and furious (which felt very validating) and arranged for me to undergo genetic testing to ensure that I didn’t have any of the genes known to be  implicated in Fallots. Lack of access to an accurate medical history doesn’t just affect the donor-conceived individual; it affects their descendants too. It waterfalls down the generations, and it can kill.

— Jo Lloyd, age 58, writer, mother of three, daughter to one mother and two fathers

*

All my life, people have said things like, “There’s a girl who looks just like you,” and it still happens all the time.

I grew up, I went to school, I went on a lot of dates, I had some serious relationships, and eventually, I got married.

I was three months pregnant when I found out I was donor-conceived.

I thought I knew who I was, so I thought I knew who my baby was, but she was one quarter a stranger, with an unknown biological grandparent. My husband could have been my half-brother. Half the medical history I’d been filling out on forms was meaningless. My ethnicity was different to what I thought it was.

My husband jokes about marrying under false pretences and asking for his money back.

Now, every time someone says to me, “I know someone who looks just like you,” I get an adrenaline rush. I ask for all the details, where they saw them, if they know their name. I wonder if any of the girls people told me about were actually my DC sisters, or if any of the men I kissed were my DC brothers.

I’m searching for half-siblings who might not even know they’re donor-conceived. Their names are on record, but the record keepers won’t give me this information, so the only way I can find them is through detective work. So far, I’ve had the opportunity to meet two half-sisters.

So, if you know someone who looks like me, please let me know.

— S Wilson, mother of one

*

I’m closely connected to dozens of strangers: my siblings. I’ve discovered a couple of my donor-conceived siblings — that is, from the same donor but raised in different families — and have been absolutely bowled over by the similarities we share. Not only in appearance, but in interests, aptitudes and hobbies. I discovered that I was studying at university with one of my brothers — in the same field of study at the same time. One of my sisters collects May Gibbs collectables just like me. And one of my other sisters has the same dream retirement plan as me — we both want to buy conservation properties to revegetate, and to conserve wildlife.

Being denied access to these people — to my siblings and to my biological father’s family — has left me feeling a bit haunted. I find myself looking for them in strangers’ faces as I walk past them in the street, on the train, at work. Truthfully, it feels disruptive, and I feel disempowered to acknowledge that this feeling of longing to meet them is in fact grief. Society expects donor-conceived people to be nonchalant about our biological families, but any other human is seemingly given permission to want to bond with their biological kin. And donor-conceived people are just like every other human in that regard. Sometimes it feels like our humanity is being diminished, and we are asked to celebrate that instead of being given the autonomy to acknowledge that for many of us it feels complicated, like we have lost something.

— Hayley Smith, age 29, advocate for donor-conceived people

*

I grew up in a multiracial family, with three adopted siblings from Asia. Our family harboured two deep secrets. The first was that we lived with violence and abuse. The second was my own identity. I was never supposed to know that I am the product of reproductive technology. My family of origin did not support my search for my identity in any way. They disowned me and cut off all contact.

After fourteen years of searching, thanks to consumer DNA testing, I at last found my missing family. I was never supposed to know my Jewish identity or that I have a birthright to Israeli citizenship. I was never supposed to know my own father or my four amazing half siblings with whom I have so much in common. I’m very fortunate to have been embraced by my new family. Needless to say, this experience has had a radical effect on my identity. I immediately found a sense of belonging for the first time in my life.

I was never supposed to know that half my family existed. This is a grave injustice and a direct violation of the UN Convention on the Rights of the Child. Identity is a human right. If adoption and donor conception are to exist, our laws should recognize that some of us effectively have three or four parents. Fully recognizing both biological and social parents, and supporting lifelong relationships with all of them, is the only way to fully honour both nature and nurture. Identity should not be a corporate or state secret. It must be considered a fundamental human right.

— Albert Frantz, age 45, pianist

*

I am donor-conceived. Miraculously, I was able to connect with my biological father thanks to a national newspaper article published in 2001.

I live in Victoria, Australia, the first state in the world to legislate to retrospectively permit donor-conceived people access to identifying information about their donor. As a result of this ground-breaking legislation, I was able to make contact with one of my donor-conceived sisters, and we now enjoy a close friendship.

What is the justification for denying a child, a human being, the right to their own identity and ethnicity, the right to know and have contact with their biological family members? If the people conceived using donor conception and surrogacy want to know their biological and birth families — and we know that they do, as is their right — then how can we justify denying it?

In the clash between the desires of prospective parents, the fertility industry and our human rights, it is sadly rare that the rights and interests of the child prevail.

— Myf Cummerford, age 38, designer, law student and mother of two, advocate for donor-conceived people

*

I’m donor-conceived, made by the state, in one of Australia’s biggest public hospitals. I didn’t know I was donor-conceived until I was 27, when my mother told me one night over dinner. My social father, the man I had thought was also my biological father until then, died when I was a teenager without the truth coming out.

When I began searching for my biological family, I was told that the public hospital had sold its practice, with all its records, to what is now a multinational fertility giant listed on the Australian Stock Exchange. The public system had retained no records of what it had done to the public, using taxpayers’ money.

I contacted the company which now owned the records. After a long delay, they got back to me and said the key information regarding my conception had been deliberately destroyed. In fact, there were holes in pages where the relevant information — the donor code — had been literally cut out. This was not the donor’s name — no one would have given that to me anyway, they were extremely clear on that — this was his donor code. By destroying that, they obscured how many times that donor’s sperm had been used (and so how many siblings I might have), obliterated any link between me and my family medical history, and also removed any chance the donor might have of discovering how many offspring he had, should he want to go searching.

After finding that out, I presented my evidence to a parliamentary inquiry in my state of New South Wales, published my story in the country’s biggest weekend magazine and featured in a two-part TV documentary. This prompted two separate state inquiries into what happened. They have never given me the reports of either of those inquiries. They have admitted that they destroyed donor codes for more than 80 families. They have full staff records of who was working at this clinic at the time, but not a single person has been held responsible.

— Sarah Dingle, journalist

*

Contact me at alison.motluk@gmail.com.

Follow me @AlisonMotluk and @HeyReprotech.

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Elephants in the room in Spain

I have not blogged for ages.  There has been plenty going on but I have not felt moved to put something in writing until this last weekend.  On Friday and Saturday Nina Barnsley, Director of DC Network, and I attended a course run by the European Society for Human Reproduction and Embryology (ESHRE) in Bilbao, Spain entitled Genes V Children: genetic inheritance and options in fertility care.  The description of the course was  “Examining the relevance of genetic inheritance in ART, especially within the context of gamete donation.”

With speakers from many European countries giving presentations that put the emphasis on family building by donated gametes rather than baby making to mask infertility and others addressing the fallout on individuals and families from DNA testing, we felt this was an event we could not afford to miss.  Sadly our enthusiasm was not shared by many others.  Jackson Kirkman Brown from the UK who shared the Chairing of the event with Mariana Martins from Portugal told Nina and I that at a typical Andrology course there would be around 150 participants.  In Bilbao, around forty five of us rattled around in a vast auditorium.  Speakers formed half of the people present and the vast majority of participants came from countries that had ended anonymity for donors. They thus could be assumed to be generally on board with many of the ideas presented.  What a wasted opportunity.

And those elephants?  We were in Spain which has the largest number of fertility clinics per head of population of any European country:  that acts as a magnet for the infertile across Europe and has failed to end anonymity, unlike its near neighbour Portugal.  There was a huge fertility clinic next to our hotel.  Where were the representatives from those clinics?

And why was the fact of low attendance not addressed in terms of what it might mean for the ESHRE community?  The course was run under the auspices of the Psychology and Counselling and Andrology sections of ESHRE but any member is entitled to attend.  There was one clinician present, a speaker.  I can only assume that most clinicians and scientists think that psycho-social ‘stuff’ belongs only to counsellors or psychologists and they need not take any notice of what happens in that domain.  But information about DNA testing and how donor conceived adults feel about their conception and how it is managed in families is vital for the way that services are thought about, set up and offered to people.  Clinics that fail to adapt to the new reality of family creation instead of baby making, DC adults desiring contact with genetic relatives and DNA testing are failing their users .  Wake up ESHRE members, the world has moved on!

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Would-be parents key to the well-being of future generations of donor conceived people

On Wednesday 19th June Progress Educational Trust (PET) in partnership with University of Liverpool ran an event titled Anonymous No More? Donor Conception and Direct to Consumer DNA testing.  We heard short presentations from genealogist Debbie Kennet, former sperm donor Andy Waters, donor conceived adult Becky and Louise Johnson, CEO of the Victorian Assisted Reproduction Treatment Authority (VARTA) in Victoria, Australia.  All speakers, from their different perspectives, were clear that direct-to-consumer DNA testing means that in the donor conception world these initials now stand for Donors Not Anonymous.  Four million people in the UK have already undergone DNA testing.  The number world-wide is 30 million.

In answer to audience questions, Debbie spoke of the need for nothing short of a revolution in the way donor conception is managed worldwide.  Becky talked about the earthquake in her life and the massive sense of loss when, in her thirties, her mother told her of her beginnings by DC.  Andy was clear that ‘telling’ was the only way to go because anonymity is now dead and Louise told the audience about Victoria where retrospective legislation has given all parties to DC the right to identifying information and, through VARTA, to approach other parties for contact, although both donors and DC people can veto this.  Putting information about DC on birth certificates was mentioned by several people as a way to make sure that parents ‘tell’, but with revolution in the air, this didn’t feel sufficient (or in my mind necessarily the right way to go).  Becky hit the nail on the head when she spoke about feeling that the onus to change the way DC is managed is falling on DC people because they are the ones whose sense of identity is being shattered and lives turned upside down by finding out about their origins.  It didn’t feel fair to her that DC adults should have to take the burden of pushing for change when so many other people were involved – from policy makers in the government and HFEA, to fertility doctors and clinics, to couples and individuals making decisions about family creation.

VARTA is held up by progressive thinkers as the model to follow but I can see that whilst it opens many doors it can also feel to some DC people as if it opens them, only to have the door slammed in their face if a donor vetoes contact.  Why not just do a commercial DNA test and find your donor or half-sibs without having government contracts binding your actions.  I also think it is wrong that VARTA can give identifying information to donors so that they can track down offspring, many of whom will not have known they are donor conceived.

Although I understand that time is limited at these events, my frustration came from the lack of talk about what can be done without legislation (although we need changes there also), at the level of how we speak about and approach donor conception and how the procedures are organised.  For a start, donor conception is NOT a fertility treatment https://oliviasview.wordpress.com/2018/11/06/donor-conception-is-not-a-fertility-treatment/

DC should be treated from the start as a way of creating a different sort of family. Those qualified to talk through the implications of this would not be doctors and nurses but counsellors, social workers and the wide range of people who understand about family dynamics.  Preparation for bringing about this different sort of family would be an accepted part of the contract (as it is in adoption) and doctors, instead of leading, would play an important but adjunct role in providing medical services when potential recipients were ready on an emotional level to consider a pregnancy.  Part of the preparation would be an acceptance of the donor(s) as people who would play a part in the lives of children conceived from their eggs or sperm at an agreed point in their lives.  I know that those of radical bent would want the donor to be a part of the child’s life right from the start, but I’m talking about starting slowly here.  The vast majority of would-be parents would retreat to other countries for egg donation and to the often seamy world of private sperm donors if this was suggested now.  Most people don’t like change and changes that appear to challenge the boundaries of the family are most strongly defended.  I would see a slow progression towards a culture change where donors would be matched to recipients through mutual choice and agreement and contracts established that would be flexible enough to change with all participants needs but focusing first and foremost on the needs of the child.

The people missing on the PET event panel were parents.  Why are parents or would-be parents so important?  Because they are the people who are taking the decisions about where to go for donor conception procedures and whether or not to share information with their children. These are the people who are key to the well-being of future generations of donor conceived people.  Of course how donor conception preparation and procedures are organised are going to have to change significantly as well. This means convincing the clinics that they are doing so much more than baby-making when they use donated gametes to help create a family or happily send people off to Spain for egg donation.  It’s up-hill work, but SO worthwhile making the effort to do.

In my last blog https://oliviasview.wordpress.com/2019/06/23/openness-as-a-state-of-mind-for-parents-by-donor-conception/ I talked about the people who come to the Preparation for Donor Conception Parenthood workshops run by DCN.  These couples and individuals are in the vanguard of those who really want to think about what they are doing BEFORE they choose donor conception.  We facilitate their process of understanding openness as a state of mind.  All recipients of donated gametes deserve this sort of information giving and support.  Everyone needs to hear and respond to Becky’s cry for taking responsibility for change.  Donor conceived adults, you are not alone.

I do continue to work part-time for DC Network but some of the ideas I have written about in this blog are mine alone and are not necessarily shared by DC N.

 

 

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Openness as a state of mind for parents by donor conception

For as long as I can remember ‘telling’ and ‘openness’ have been virtually interchangeable terms when talking about letting donor conceived children know about their beginnings.  You told the children so that openness could be established in the family and hopefully with a wider circle around the child as well.  But the words of a donor conceived adult who has spoken at both a DCN conference and the workshop DCN held for professionals last year have rung more and more true of late.  Openness is a state of mind not just something you achieve by ‘telling’.

Quite often I run what is referred to as the Psycho-social Session at the Preparation for DC Parenthood workshops run by DCN.  The people who attend are mostly those potential parents (not necessarily via donor conception as some will go on to adopt or foster) who want to think more about what they are getting into – or might get into, before taking the step of starting the medical treatment side of seeking to create a family using donated gametes.  They understand that there is more to it than that, and they come to explore their hopes, fears and anxieties about how different donor conception parenting might be to being the parent of a child conceived without help from sperm or eggs from another person.   Those of us facilitating the participants progression over a weekend do not shy away from talking about ‘difference’; from recognising the men and women who give/gift/sell their gametes, as real people who are likely to come into the lives of donor conceived offspring at some point or another and the potentially uncomfortable language their children may use to refer to this person.  Of course we talk about the importance of ‘telling’  children early and often but I have only realised recently that what we are partly, but most importantly doing, is attempting to facilitate the start of an internal process leading to openness becoming a state of mind, the final stage of which involves the ultimate responsibility of a DC parent to accept their (whatever age) child’s feelings about, and language around, their unknown progenitor and support them in whatever they need to do.

Thank you Becky.

 

 

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New findings shed light on when children really understand about donor conception

Perhaps because I was one of the speakers at the DC Network London conference held at the end of April, I haven’t blogged about the event, but it was a wonderful day.  The title of my presentation was Are the Children Alright? and in hindsight actually all of the presentations turned out to have this question as a theme running through them.  I was struck by many things throughout the day but for now I want to concentrate on the presentation by Dr Vasanti Jadva from the Centre for Family Research at Cambridge University.  Vasanti was with us to talk about the latest findings from the longitudinal study the Centre have been doing for eighteen years now with families created through egg and sperm donation, including surrogacy in a few cases.  Children whose parents were being open with them about their conception were asked at ages 7, 10 and now 14 how they felt about being DC and their responses showed clearly how understanding of what being donor conceived means (fundamentally a genetic disconnect between at least one parent and child) comes about only very slowly.  Jadva reported that whilst children of seven often seemed very positive about their donor conception and/or surrogacy, they found it very difficult to explain anything about it.  By age ten they had a rudimentary understanding but it was only by age fourteen that they fully understood what it meant.  The young people who took part in the research are now eighteen and the Cambridge team are about to re-interview them.  I suspect that it will only be by this age (or older) that the participants will be able to say what being conceived this way means for them, as opposed to simply understanding about the lack of genetic connection.

I think there are a number of implications of these findings.  Firstly, and probably most significantly, it is important for parents and others to know that just because children can parrot language they have heard from parents or books about donor conception and seem to be unconcerned about it, that we can assume they fully understand what being donor conceived means.  That they are comfortable and open about it is wonderful and a good foundation but it is only a snapshot in time.  We cannot assume anything for the future based on the evidence of a seven or ten year old’s indifference to being donor conceived.  Things can and do change over time. Not necessarily for the worse, but definitely demonstrating much more nuance and sometimes ambivalence.

The realisation that children still only have a rudimentary understanding of donor conception at 10 also means that those parents who do not tell significant others about a child’s beginnings because they say it is the child’s story to tell, are missing an important opportunity to provide community support for their child during the years in which a child’s comprehension is minimal but growing.  It is unfair for a child with incomplete understanding to be expected to carry the burden of telling others when all they have is language provided by their parents and not a true realisation of the implications of the information for themselves.  In my opinion it is the parents’ responsibility to let those who need to know (including close family, carers, teachers and doctors) in their child’s interest until the child is old enough to take on that responsibility for themselves, possibly in tandem with parent(s) for a while.  Not sharing the information could well lead to a child being upset at not being able to tell their story properly and also puzzling over why Auntie Tracey or Grandma didn’t know.  Does this mean that there is something shameful about being donor conceived/something wrong with me?

These findings could at first sight appear to undermine the current orthodoxy of openness about donor conception with children from a very young age, but I think that would be to misunderstand it.  Sharing information from under five not only allows parents to practice and get comfortable with the language but also encourages a ‘small steps at a time” approach with a child, building up the information over the years.  In this way there is no moment of shock and the story of how the family came into being can be amongst the normal and everyday topics the family chats (and laughs) about.

Getting back to the Cambridge research, the numbers are small – only 44 out of 56 ‘told’ adolescents agreed to discuss their conception – but this may reflect the awkwardness of being 14.  It also only looks at heterosexual couple families.  However, it is the only longitudinal study of DC people that has ever been carried out and it is exclusively British, many of the other surveys or studies being mostly American.  It is definitely a good start and I for one can’t wait to know what the eighteen year olds have to say.

The perspectives of adolescents conceived using surrogacy, egg or sperm donation, S.Zadeh, E.C.llioi, V.Jadva and S. Golombok,  Human Reproduction, Vol.33, No6 pp.1099-1106, 2018

 

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