All things Nuffield…and more

Last week was ridiculously busy so no time at all to blog.  Highlights were on Monday when Sharon Witherspoon, Deputy Director and soon to be Director of the Nuffield Foundation confirmed a grant of £50,000 for three, or perhaps four, of the nine projects we had put in funding bids for.  It was sad not to get all we asked for but in the current climate we felt lucky to be selected at all.  All four of the independent references that Nuffield sought in order to establish our credibility as an organisation were outstanding and we can be very proud of that.  Towards one of our funded projects I opened a conversation with one of our members who has experience with writing science based learning materials for children.  She will contribute her ideas and expertise to a meeting to be held soon to scope the writing of a book for DC 7 – 11 year olds, a group that at the moment is uncatered for.  This is a developmental stage at which children often become curious and need straight forward but age appropriate answers to their questions.  I then spent some very interesting time talking with a member of DCN who is a documentary film maker about updating our film A Different Story, featuring seven sperm donor conceived young people but made nearly ten years ago, and making a further film to include children and young people from different donation and family types.  We are so lucky to have so many very talented people within DCN.

Most of Wednesday was spent with ‘Zannah going through her dissertation on Donor Conception and Identity Formation, making sure the arguments were consistent and logical and the sentences weren’t too long.  She has had very positive feedback already from her personal tutor about this enterprise and I know was thrilled to have it finished and bound by Friday.  Well done Zan, nearly there!  You have done so well.  So proud of you.  Thursday and Friday played hooky from work to be with our beloved grand-daughter who at eight months is a bum-shuffling bundle of joy.  Her mum hasn’t been well recently and it was a pleasure to go and help.

Saturday saw one of the bi-annual meetings of DCN Trustee and Steering Group.  Important items on the agenda included both our Nuffield grant and our contribution to the Nuffield Council on Bio-Ethics enquiry into Donor Conception and Information.  A group of us, including two DC young adults, will be going to give evidence in person on Friday 27th April but we will also be submitting written answers to questions posed on their website as well.  The Trustee/Steering Group (which includes two DC adults, others being parents) cannot hope to actually represent all the shades of opinion that exist in the Network but we do aim to be informed by members views as we hear them.  Sometimes, as in the case of information about donor conception being included on a child’s birth certificate, we have to say that there are strong views held both ways on this topic.  No-one is against children being given the information that they are donor conceived as early as possible, but there are those who think that if parents (outside of DCN) do not take responsibility to ‘tell’ then the state should have a hand in this and others who feel that it compromises the privacy first of families (as birth certificates are mandatory for school entry) and then DC people to choose who should know about their conception.  A tricky one.

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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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23 Responses to All things Nuffield…and more

  1. RachelP says:

    As a former school governor I can assure you schools are obligated to keep information about pupils confidential. Plus, within a school information is only shared with those who need to know it to carry out their duties, which in the case of donor conception would be, well, nobody, as it has no impact on teaching or learning. It would be an inconsequential detail on a birth certificate that is used by an administrator solely to show the local authority the child is entitled to a school place (I believe the school doesn’t even keep a copy of the certificate, though I would need to double-check that). So how would the privacy of families be compromised?

    Also I can’t be the only person who sees something amusing in “DC people should be able to choose who they tell about their conception” being used as an argument against a measure that would ensure DC people themselves know they’re DC. My gosh, we can’t go around taking away the right of people to tell other people things that they don’t even apparently have the right to know themselves! Coz that would be crazy.

  2. RachelP says:

    Have just looked on the Directgov website and adoptive parents are issued with an adoption certificate, not a birth certificate. They must have to take this when they enroll their child in a school but I’m not hearing anybody arguing this is an invasion of their family’s privacy. It is taken for granted in adoption, as it should be in donor conception, that the child has a right to know where they come from.

  3. oliviasview says:

    I’m sure schools are obligated to privacy Rachel but that doesn’t stop the school secretary telling her friends and others in the community. Schools are only one example. Apparently for ‘security reasons’ birth certificates are demanded in many areas of life these days. And of course I am talking about donor conceived people who already know about their method of conception when I say they are entitled to privacy. Of course it would be ridiculous as a protection method for those who don’t know.
    And in response to both your posts, sadly donor conception has yet to achieve the complete acceptance that adoption has. No-one bats an eye these days if someone says they are adopted. Sadly this is not yet true for DC. As you know DCN is working hard to change this, but my personal opinion is that trying to force parents to share information via birth certificates is likely to be counter-productive.

  4. RachelP says:

    But then we should never share any information with schools, GPs, banks etc. There is always a risk confidential information will be leaked. That’s what we have data protection laws for. That school secretary can share personal information all over the place but she’ll soon lose her job if she’s caught.

    You can’t protect some DC people’s privacy at the expense of other DC people not even knowing they’re DC. Anyway, I think it is for DC people to say whether or not they’d feel donor conception on birth certificates would be a breach of their privacy. I wouldn’t feel it was a breach of mine. After all, who shows their birth certficate to their friends or their employer or anybody who matters to you personally? You only ever show it to people in officialdom, who are bound by data protection laws. Do you think public organisations don’t take those seriously? In the NHS we are constantly being reminded of the importance of what they call ‘information governance’.

    If we are all agreed that DC people should be told about their conception then we should be putting measures in place to ensure it happens.

    Also donor conception would be accepted a lot quicker if the law encouraged openness.

    It seems to me that for all the talk of openness around donor conception being a good thing many parents really want the secrecy to continue.

  5. Maddymoo says:

    Mmmm! A tricky one, although I am tempted to agree that the school secretary…KS1 teacher etc are prone to “Pillow talk” etc…I was informed by my school cleaner as she leaned on her broom last year that a child at school was conceived through sperm donation…

  6. oliviasview says:

    The HFE Act DOES encourage openness. It is mandatory for clinics to talk with would-be parents about the importance of telling their children early and to let them know where they can find information about how to do this. But you can’t force it to happen. People have to feel comfortable in themselves before they will do so. Putting info on birth certificates would, at the moment, simply encourage people to lie and/or go abroad so that there was no record of conception in the UK. Once people have lied to an official body then it is much harder for them to change their mind about telling as a child grows older.
    I rarely take personal offence Rachel but your statement around ‘parents wanting the secrecy to continue’ makes me angry. We were pioneers in being open with our own children from the start and have devoted the last 20 years to bringing donor conception out of the closet. How dare you imply that I want to keep the secrecy.

  7. Maddymoo says:

    PS I feel I should add I am all for openess and a more US approach to DC such as the embryo adoption programmes that are run in many states.

  8. RachelP says:

    Firstly, apologies for the mispelling of ‘certificate’ in the post above.

    Now put simply Olivia, I just don’t understand how people can be against secrecy around donor conception yet not support the one thing that would ensure there was no secrecy ever again for anybody, not just the few who are lucky enough to have parents who are members of the DCN.

    Donor conception is half-way out of the closet (that we have progressed from being in the closet is of course something the DCN has greatly contributed to). It will never be fully out of the closet until all DC people know they’re DC, and as far as I can see the best way to achieve this is to get the fact put on birth certificates.

    Regarding lying to official bodies, some DC people would argue that’s what happens now – that parents go to register the birth of a DC baby, make out they are its biological parents in spite of knowing they’re not and deceive the registrar. I’m not sure exactly what I think about that, but some time ago I tried to find out what would happen if somebody went to register the birth of a baby and said they wanted to put ‘Sperm donor’ as the father. The registrar I spoke to on the phone at my local registry office was flummoxed by my question. She said she’d never heard of it happening, and did not know the legal position. So maybe whilst parents are not actively lying to registrars they are not exactly queueing up to tell the truth either.

    I think it’s no good waiting for parents to tell. My parents didn’t feel ready to tell me even after 25 years and after I’d been lead to believe I had a good chance of inheriting a life-limiting illness. As long as there is even one DC person out there who doesn’t know they’re DC something is wrong. That is one person who could have the gene for a terrible illness and not know it; or conversely, as in my case, believe they have the gene for a terrible illness when they don’t; or could inadvertantly have a sexual relationship with a family member; or be missing out on a great relationship witn their father, uncles, aunties, grandparents and/or siblings.

  9. RachelP says:

    D’oh! Inadvertently, sorry.

  10. RachelP says:

    One more thing. If donor conception was put on birth certificates and people chose to lie about it that would be a matter for their consciences but at least the law would have done all it could to encourage them to do the right thing.

  11. oliviasview says:

    Practically, how do you think the fact of DC should be included on birth certificates?

  12. RachelP says:

    How I see it working is either the HFEA informing registrars that a baby has been born to those parents, in the same way hospitals inform them so that they expect a baby to imminently be registered, or parents being asked directly if the baby is a result of donor conception when they go to register the birth. With the latter, there would be a risk of parents not being honest but at least they would be encouraged to tell the truth.

  13. oliviasview says:

    And how would you envisage the information appearing on the certificate itself, given that there is no obvious place for it at the moment?

  14. RachelP says:

    Not too sure what you are getting at. Could they not add a box for it? I read that when a child is adopted they add ‘Adopted’ to the original birth certificate. Maybe they stamp it? Could they not just do the same thing in the case of donor conception?

  15. Barry Stevens says:

    I don’t know how it would be executed in the UK, since I don’t know exactly how Birth Certificates are handled now. David Gollancz and Tom Ellis of IDOA have put some thought into this. It is outlined on http://www.idoalliance.org/. Perhaps they could detail this. From my point of view, the whole question of disclosure is circumvented by accurate birth certificates. It would be considered outrageous for the State to inform a child against parents’ wishes or force parents to disclose! But once the child becomes an adult, the state has a responsibility to its citizen not to collude in falsehood and to record the genetic truth. It is not necessary for this information to be public on a short form and would not be available (I would imagine) to children. Also — I don’t think that making this shift would preclude a lesbian partner or gay partner being included as legal parent.

  16. Barry Stevens says:

    Just to add, in response to earlier post from Olivia M.: I do appreciate the work DCN has done in promoting openness, and families such as Olivia’s, where honesty and openness was the norm. This was pioneering and should be honoured.
    .

  17. RachelP says:

    One more point I would like to make is that a human rights case can be made in favour of DC people being told they’re DC. Article 8 of the UN Convention on the Rights of the Child states: “Children have the right to an identity –
    an official record of who they are. Governments should respect children’s
    right to a name, a nationality and family ties.” There it is in black and white – recognition of our right to a relationship with our biological families. This has just been recognised by the government of the state of Victoria in Australia by its Inquiry into Access by Donor-Conceived People to Information about Donors report, which concluded that all donor-conceived people should be aware of the manner of their conception. The difference between the UK and Victoria is, of course, that down there legislators have realised the needs and interests of those born as the result of assisted reproduction should outweigh all other considerations, including the wishes of parents. I, for one, can’t wait until we adopt a similarly progressive attitude in the UK.

  18. RachelP says:

    Sorry, recognised too by the government of the state of Victoria.

  19. This is about the birth certificate discussion and I am writing from the US where things work somewhat differently, I think. I’ve written a good deal about this issue and others tied to it on m own blog.

    It strikes me that including information on the birth certificate might do very little to inform the child as children don’t usually see their own birth certificates. At the same time it does raise a whole series of other privacy issues for me. If I want my child to play after school soccer (football) here, I have to provide a birth certificate (to prove age). Why does the soccer coach need to know the manner of my child’s conception?

    I think there is some beneficial effect–if the information is on the birth certificate then parents know that eventually the child will find out then this ought to encourage parents to tell children in the time and manner of their own choosing. One can hope anyway. But it seems rather attenuated and I don’t know that the possible benefits outweigh the concerns I have about privacy vis-a-vis the soccer coach, etc.

    This does not mean that I think secrecy is okay, by the way. And I’m glad to learn that in the UK there is some systematic effort to educate prospective parents about what’s best for their kids. It seems to me that the combination of reducing stigma around use of third-party gametes and educating people who are using them is far more likely to get to openess with children than is putting a new box to tick on a birth certificate.

    (FWIW, in the US adoptive parents get a new birth certificate and it doesn’t say “adopted” on it.)

    • How about the birth certificate containing factual biological information and all children being, say, sent a copy of it in celebration of their 18th birthday? And having a different document for all practical purposes, with only the legal custodians’ names on it?

    • oliviasview says:

      Thank you for your contribution Julie. I’m with you on the education and reducing stigma trail and I think we are doing pretty well with this one in the UK. Love your blog by the way and have signed up for it…highly recommend to others.

  20. RachelP says:

    I agree with Pronoia Agape. Have done a bit of research and apparently in the case of adoption two certificates are issued, a long one that has all the details of the adoption on it and a short one that just has the child’s name and date of birth on it. That resolves the privacy issue – why can’t we have the same in the case of donor conception? I also like the idea of the birth certificate being sent to the child in the way that, for example, their National Insurance card is (just to explain this to our friends outside the UK, in the UK you can’t work without a National Insurance number – the government sends you a card with this on as soon as you are old enough to work i.e. on your 16th birthday). If it was sent with the National Insurance card that would be good, because the child (well, young person) would see it just as they turned old enough to legally have sex and therefore in theory would not be exposed to the risk of accidental incest at all.

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