Are there circumstances where it is OK not to be open?

This post will be considered heresy by some, but I think it has to be talked about.  Are there circumstances in which it is OK not to be open about about donor conception?  Not only OK but actually in the best interest of that child and his or her family?

I need to say first that these are views that are very personal to me and that there are plenty of people in DC Network and elsewhere who would not support them, but here goes.  Openness to me means first and foremost being honest with children about being donor conceived.  Not leading them to believe that they are genetically connected in the way that they would expect and assume unless informed otherwise. Beginning to share the information with children from a very young age- before they are able to fully understand the implications – also seems to help children feel comfortable with their story.  So far so good in most Western cultures.  But what about children from faiths, cultures and communities that find donor conception unacceptable?  Where children would find it hard to feel proud about their beginnings because of disapproval or even rejection by family and those around them.

A rather harsh but understandable response to this might be to say that donor conception should not be used by people whose faith or culture forbids it.  However, it tends to be the communities that reject assisted conception who also value above almost anything else the ability to have children.  Women (for infertility is sadly so often assumed to be only a female problem) who fail to conceive are diminished in status and can become outcasts.  It is unsurprising that IVF and donor conception flourishes in private clinics in the rich Gulf states.  The poor do not have access to such solutions.  What happens in other countries is of concern but out of our hands, but what of minority ethnic communities in the UK, or indeed members of the Catholic church in this country or people living in areas like Northern Ireland where the guarding of personal privacy and neighbour nosiness have long coexisted as two sides of the same coin.  Where do we draw the line in saying that the best interests of the child are served by not telling him or her about donor conception?

I know many UK clinics assume that minority ethnic recipients of donated gametes are never going to ‘tell’ so they don’t bother talking to them about this possibility. This attitude is not only patronising towards and lacking in respect for the individuals concerned but also disrespectful to the concept of openness itself.  If ‘telling’ is truly accepted as better for relationships in families then minority ethnic couples need to at least be informed about the benefits and offered ways in which they may be able to adapt the principles to fit with their beliefs and culture.  In addition they need to understand the laws and regulatory framework under which donor conception occurs in the UK and know that their children will have opportunities in the future to find out if they have been donor conceived if they suspect something is amiss in the future.   In fact by keeping the help they have had in conceiving from their children they will be running all the risks that any other family does when there is a big secret at the heart of family life.  This applies also to Catholic families and those living in small and small-minded communities. There are undoubtedly very hard decisions to make.

Does ‘telling’ always have to start early?  What has come to be the orthodoxy says yes.  People contact DC Network sometimes worrying that their child is now four or six and is it too late to start?  No of course it isn’t.  Ideally children are introduced to ‘their story’ along with their mothers milk, but if for a range of reasons this is not possible, then telling can start at any age.  If a child really could be at risk within their community (and I’m not talking about school-gate chat or neighbourhood gossip here) then leaving introducing donor conception until around the age of 8 could be an important compromise.  The child is respected by being told but is old enough to understand that not everyone needs to know this information.  What will make a difference is how they are told.  A child given information by parents who are confident and comfortable with using donor conception is likely to receive a very different message to a child whose parents feel guilty and ashamed about their method of family creation.  For this reason people from any communities who might find openness difficult are in fact deserving of more rather than less time from clinics than those for whom openness poses no or little threat.  One of the problems here however, is that many clinics consider the requirement placed on them by the HFEA Code of Practice to let would-be parents know that ‘telling is best’, to be a tick-box exercise rather than a responsibility to the family they are helping a couple to create.

So maybe, just maybe, the answer to the question posed at the top of the page is that donor conceived children in all UK communities can (and should) be told, but that for a very few it may be necessary to wait until they are a little older.  In the meantime parents are deserving of more rather than less support from clinics and patient organisations.

Another situation where the question arises about children being told is where a child has a really severe developmental or learning disorder.  I’m not talking about Down Syndrome here, but someone at the far end of the autistic spectrum or with a dramatically reduced capacity to learn.  Is it patronising to assume that ‘telling’ about donor conception is going to be at best information that is redundant to their life or at worst upsetting because it is only partially understood?  Or is it important and respectful that the information is conveyed in a developmentally appropriate way and it really doesn’t matter if it is not understood?  This is something I remain conflicted about, particularly worrying that parents of children with profound disabilities have so much else on their plate that explaining about donor conception seems rather low on the list of responsibilities and priorities.  But some people can get very heated about this sort of thing.

In her excellent book Mommies, Daddies, Donors, Surrogates; answering tough questions and building strong families, clinical psychologist Diane Ehrensaft proposes that there are only three good reasons for not telling children at all or postponing telling to a later time.  They all put the needs of the children first –

1.  Issues to do with a child’s ability to understand: a child with a significant learning or developmental problem may well not be able to take in information about his or her origins.

2. Issues for the bond between parent and child: for instance if a parent has been away from the child for a long time, the re-building of this relationship should come before telling. Issues for the child from outside the immediate family: if wider family members or those in the community are likely to reject a child conceived by donated sperm, egg or embryos then it may be difficult for a child to feel any sense of pride about their origins.  This situation can apply where a child is being brought up within a culture or faith that disapproves of donor conception.

Ehrensaft, however, goes on to point out that parents need to be very honest with themselves.  Concerns that a child may be upset or confused by being ‘told’ can cover anxieties and fears that properly belong to the parent and are not really to do with the child at all.

Amen to that.

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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16 Responses to Are there circumstances where it is OK not to be open?

  1. Kriss Fearon says:

    I’d really like to know more about where, when and how donors tell their children, especially if they were single when they donated and then met a partner and had kids with them afterwards. Did they disclose to the partner or keep it quiet?

    I realise it’s only tangentially related to the point you’re making, but the issues to do with relatedness and incest fears work both ways, even if belonging/identity issues are exclusive to DC people.

    • oliviasview says:

      I agree Kriss. This is an area that needs much more investigation and work. Just this week saw a little booklet, available on-line, for children of donors to London Sperm Bank. I gather the London Women’s Clinic has done a parallel one for egg-sharers. It’s a good simple start, bit similar to DC Network’s Our Story books for donor conceived children.

  2. marilynn says:

    I recently helped a donor offspring activist locate her brother who is also donor conceived but was given up for adoption because he had downs syndrom. I don’t know yet if he understands that he’s adopted let alone donor offspring. The adoptive family was charming warm and welcoming to her. But I have not inquired into his understanding of her as his sister. She does not know yet whether they are full or just maternal siblings. She certainly loves him as her brother. She waited so long searched for so long to have him back.

  3. RachelP says:

    You know my opinions on this Olivia (I know I am one of the people who “can get very heated about this sort of thing” (that would be because discrimination gets me pretty angry)) and to be honest I’m surprised you’re still banging this drum, arguing that there are some situations in which secrecy is ok when the DCN is supposed to be against secrecy. I can only reiterate what I’ve said before and have copied and pasted my comments from when we last debated these issues below.

    “Regarding telling in communities where donor conception isn’t accepted, well, either telling is right in principle or it isn’t. If telling is the right thing to do then it is right is all situations, communities and cultures. By saying that these offspring shouldn’t be told because it may be hard for them to be proud of being DC you are implying there are some circumstances in which it’s acceptable to feel ashamed about using donor conception and for that shame to be passed down to the offspring. Offspring shouldn’t be made to feel ashamed of the manner of their conception! What did they(/we) do wrong? Also it’s like saying people shouldn’t come out as being gay because some people don’t approve of homosexuality and that makes it hard for gay people to be proud of who they are. The problem is not with the gay person but with the intolerant society around them. And in fact the more people are open and proud about who they are the more that society will be forced to change. It is the same with donor conception in some cultures – if more people were open about the fact they’ve used donor conception the more positive attitudes towards donor conception in those communities would be. Some people have to be brave and speak out or change’ll never happen. Finally, I would say if people are very scared of the opprobrium of their community they shouldn’t be using donor conception in the first place. They can’t have it both ways – i.e. do something their community doesn’t approve of but expect there to be no consequences.

    Not telling people because they have a disability is discriminatory. If donor conception can be explained to a very small child why can’t it be explained to somebody with even severe learning disabilities? I have some experience of working with people with profound and multiple disabilities and see no reason why, with appropriate support, they shouldn’t be told.”

    • oliviasview says:

      I just don’t think it’s as simple as that Rachel. There are more shades of grey in all these situations. I particularly have huge sympathy with women who find themselves damned if they do (use donor conception) and damned if they don’t (have children). Just wanted to reiterate that these are personal views, not necessarily shared by nor official policy of DCN.

  4. RachelP says:

    If there are no moral absolutes then ultimately anything can be justified. Like, as in this case, the idea that only white British, middle-class, able-bodied children have rights, such as the right to an identity.

  5. oliviasview says:

    I’ll say clearly here what I considered saying but didn’t in the main piece…if telling is good enough for white people it’s definitely good enough for black. I do think children from all races, creeds, faiths and communities should be told but I also think that this may have to be done differently in those communities where a child (and his mother) might not thrive if it were publicly known that donor conception had been used.

  6. RachelP says:

    Morons will always bully people, you can’t not follow your conscience because you might be bullied for it.

  7. single mum says:

    I completely understand that people living in cultures and communities where donor conception is frowned upon or even outlawed are in a very difficult situation. However, I don’t think that delaying telling a child until they are eight will solve anything.

    Imagine: You are eight. You assume your biological parents are your biological parents. One day, your parents sit you down and say they have something important to tell you. They explain that in fact your biological father is not your biological father. Instead you were conceived using a sperm donor. You probably have no idea what this is and no context in which to place it given that you will have likely grown up knowing no other children in the same situation and in a culture/community without positive role models. You are then expected to absorb this life-changing new information in a way that does not damage your sense of self and place in the world… while simultaneously being asked to keep it secret because people in your culture/community/extended family believe that the manner of your conception is morally wrong.

    Surely this is a receipe for shame, however well-meaning the parents?

  8. oliviasview says:

    I absolutely agree that telling at 8 or so is NOT ideal, BUT if parents are well prepared and not ashamed themselves then there is a good chance it could go well. I have known of plenty of situations where children have been told at older ages and have not (apparently) been damaged by it.

  9. single mum says:

    But were they told and then also warned not to spill the beans the next day at their Catholic school/local Mosque/to their friends….? Were they told and then warned that the culture and community in which they lived disapproved of their family and the way they were made… ? That’s the difference. The issue here is not whether telling late is optimum (no it’s not, but it’s better than telling never) but whether telling at eight is a compromise solution for those families who conceive in cultures and communities which strongly disapprove of donor conception. The only reason these families are telling late is so that they can get their children to collude in a lie (or keep the secret, if you prefer) to the outside world.

  10. RachelP says:

    I’ve literally just been reading about something called the drama triangle and I think it’s relevant here – it can argued that these parents are putting themselves in the role of Victim, their communities are playing the part of Persecutor and that you, Olivia, are positioning yourself as a Rescuer (Rescuers have good intentions but actually encourage the Victim to remain powerless). For further details see here: http://www.lynneforrest.com/articles/2008/06/the-faces-of-victim/

  11. oliviasview says:

    Hi Rachel…yes, drama triangle is very interesting stuff and I can see it’s relevance to many situations in life but I am at a bit of a loss to how it is relevant here. And sorry, I really don’t fit the description of Rescuer here. I just think the situation for families, particularly from minority ethnic communities, is very complex and that by offering lee-way and flexibility, without compromising principles, is respectful of their situation and encourages them to engage with organisations like DCN instead of feeling that DCN is a place where they would be judged and found wanting. Empowerment comes only through proper engagement and holding fixed (supposedly superior) positions does nothing to encourage listening and engagement.

  12. single mum says:

    I agree that families who come from countries or communities where donor conception is outlawed/criticised need to be given support. But I’m just not sure that the compromise suggested here is one that will actually work.  Or rather, it may work in the short term – giving the parents the excuse they need to plunge on with donor conception despite the moral disapproval surrounding them.   But in the long term it is deferring the problem until later.  Worse, it is shifting the problem onto the child.  It doesn’t seem fair that instead of the intending parents having to deal with community disapproval for infertility/using donor gametes… it is the child who has to deal with it by 1) learning about their conception late and 2) being asked to keep secret, for fear of censure, this major fact about their identity.   If this is a solution, it’s one for the intending parents, not the child.  This is, I feel, a good example of how the interests of children and parents are not always the same – a fact that the phrase ‘supporting families’ sometimes obscures.

    • oliviasview says:

      Very good points single mum…but I guess that in the end I am for what I call principled pragmatism. What I mean by it (in this case) is that as people from communities where donated gametes are disapproved of are unlikely to stop seeking to have children by donor conception when all else fails, we need to do everything to make sure that they have the best information available, the best support going and are enabled to tell their children in a way and at an age that fits with their beliefs and culture. In doing so we may be influencing a change of culture in their community but we cannot necessarily hope for that. And we need to recognise that it may be thought deeply patronising and disrespectful that we might seek to do.

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