Nuffield Bio-Ethics report: the good, the bad and the ugly

As I was having my heart adjusted back to normal rhythm last Wednesday (and yes, it was successful) the Nuffield Council on Bio-Ethics was launching it’s long-awaited report into Ethical Aspects of Information Sharing in Donor Conception.  It’s a weighty document, 162 pages with references etc. and an Executive Summary of 17 pages so it’s going to take some time to digest, but first responses that have come my way reveal considerable disappointment.  Certainly donor conceived adults present at the launch event were incredulous at Point 29 (5.24 in main report) in the Executive Summary that states….”a person who chooses not to share information is choosing not to be ‘open’ but is not necessarily being dishonest.  It is not, for example, usually considered ‘dishonest’ to choose not to disclose private information”.  This is a wonderful academic argument that might work well in theory but falls apart when considered in the context of life in any family where comparisons of likeness, in terms of looks, habits and talents, is a topic of everyday conversation.  In non-telling donor conception families parents will be avoiding and evading questions and mis-leading their children on a daily basis.  Direct enquiries about family connections are likely to lead to direct lies.  Deception by omission?  I call it dishonesty, and it will be impossible to avoid.  How can this possibly be a sustainable basis for a relationship that should be based on trust?

At odds with some of those at the launch meeting, I DO think that it is the responsibility of parents to tell their children rather than this becoming a function of the state, but I also think that Nuffield badly underestimated the self-interest of parents when it comes to the issue of telling.  It is all very well the Report saying that parents need to listen to all the evidence about telling being best and then act responsibly, but for many men and women, anxieties that have everything to do with them and little to do with the child, will propel them down the path of non-disclosure.  Nuffield is very keen on using the language of ‘interests’ rather than ‘rights’ and by and large I would agree with this less confrontational approach, but I find it distressing that when there is an acknowledged conflict of interests between parent and child, no weight is given to the needs of the child…the one stakeholder in the donor conception triangle who has not been able to exercise a choice.

On the Telling and Talking film made by DC Network some years ago, our (then) 19 year old son Will talks about being so proud of his Dad for having faced up to his infertility and made adult decisions about going ahead with donor insemination and being open about it.  And that is what becoming a parent by donor conception means.  It requires men and women to be full adults, facing up to their fears and anxieties and taking on the responsibilities incurred by choosing to have a child by donor conception.   By failing to grasp this moral imperative, Nuffield has allowed its generally positive message that children should be told from a young age, to be diluted to the point that the British Medical Journal could legitimately headline its article on the Report, “Donor Conceived Children Should Not Have the Right to be Told about Their Origins”.  Shocking.

If parents are unable to face up to their responsibilities to their children then I’m not sure that they are likely to take seriously Nuffield’s desire for them to act responsibly towards their donor.  For indeed, if a child only finds out in a family quarrel or by accident in teenage years that they are donor conceived, then their desire to find their donor – or even in some cases to see that donor as an alternative parent – is likely to be much greater than the child who has always known.  Pity the poor donor at the receiving end of these expectations and emotions.  As Walter pointed out in his response to the Report, well-advised donors could insist that their donations only go to prospective parents who the clinic has identified as being committed to telling early.  In this way, clinics would not have to refuse treatment to non-telling parents, the preferences of donors would do it for them.  “That would be consistent with the Working Party’s preference for measures that empower participants in shaping decisions as opposed to having rules or limitations imposed on them.”

In many ways I am sad to spend so much time writing about the negative aspects of the Working Party’s deliberations.  There is actually much to commend, particularly in the general approach: the emphasis on people and relationships (although I do think that the inclusion of a donor conceived person or a parent would have kept feet more firmly on the ground).  The discussion at the beginning on how we think about how families are formed and kinship bonds is thoughtful and very worth while reading…’kinship bonds may arise as biological connections and/or may be forged through care and nurture.  From one perspective, the link between a donor and a donor conceived person may be indisputably there, while from another it’s self-evidently absent.”  

Hugely welcome is the recommendation that clinics should be taking a longer view of what it is they are doing…not just using science to create a pregnancy, but helping to build families.  And this in the context of state promotion (referred to as stewardship) of donor conception as just one of the ways in which modern families are made.  In sections 50 and 51 of the Executive Summary there is support for continued state funding of the voluntary register and recognition – long fought for – of the need for intermediary as well as counselling services for all partners in the DC triangle.  Slightly more questionable is the recommendation that on a dedicated donor conception website, the HFEA should offer support to non-telling families who, in an oblique reference to DC Network, “may not feel comfortable with the under-pinning approach of particular voluntary sector organisations.”  It is interesting to ponder on the advice that might be carried on such a site.  Another welcome recommendation is that the HFEA, in conjunction with the Donor Conceived Register, should initiate a public information campaign about donor conception and the possibility for past donors to make themselves identifiable if they wish.” (6.57 main report).

So, a mixed bag.  ‘Wet’, as a colleague dispiritedly described to me.  “They just kept digging themselves deeper into a hole when trying to explain that concealment of donor conception was not being dishonest.”  But on the other hand, it gives us all a hell of a lot to think and talk about.  The almost forensic picking apart of the interests of different parties is long-winded but essentially fascinating and revealing.  I might significantly disagree with parts, but I do welcome the contribution to the debate.

http://www.nuffieldbioethics.org/donor-conception

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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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8 Responses to Nuffield Bio-Ethics report: the good, the bad and the ugly

  1. Kriss Fearon says:

    I’d hate to be married to a philosopher!

    ‘You lied about having an affair’
    ‘I didn’t lie, I simply chose not to disclose that personal information’.

    Hmm.

    I haven’t had time to read the whole thing in detail yet, just the summary, intro and the bits that relate to donors. It’s a very interesting piece of work.

    I tend to feel – and do correct me – that parents don’t tell not because they think the child doesn’t a right to know (though that might be a comforting rationalisation), but because when it comes to the moment of telling, it’s just too hard and upsetting and difficult to find the words. That’s why supporting parents in telling and giving them the words is so important.

  2. oliviasview says:

    Hi Kriss
    I think parents don’t tell for lots of reasons but just not knowing where to start or get the words out is very common. These tend to be the ones who feel guilty about it. Others genuinely do not feel that it is the child’s business…they feel the least guilty and interestingly enough because of this may not generate difficult and conflictual feelings within the family because of guilt. They do tend to fall hard, however, if the information comes out via a third party or by accident. Others still are anxious about ‘what the neighbours will say’ and/or have feelings of shame about infertility and need of help from a donor. Women still protect men from having to face up to their infertility. It’s mostly not helpful. Unlike some hardliners I do think there are situations where not telling or delayed telling is appropriate. I might blog about these tomorrow.

    • Kriss Fearon says:

      That would be interesting.

    • Becky Saer says:

      Telling the child early is, of course, the right thing to do. My problem with the Nuffield Report is its complete support of the law on donor anonymity – it never questions it. The state should not interfere with donor-egg treatment. I say this as someone currently pregnant with a donor egg. I went abroad for my treatment, chiefly for the anonymity protection. For the HFEA to suggest the lifting of donor anonymity is about ‘responsible parenting’ is very judgmental and interfering. What’s more, it is not based on evidence. Donor-conceived children are surely unlikely to have a crisis of identity if they are educated about their origins early and, most importantly loved. .

      • oliviasview says:

        Hi Becky
        Congratulations on your pregnancy. I have to say I’m with Nuffield on this one. I do believe that children should have choices about knowing who their donor is and/or being able to have contact with half-siblings. Of course loving children and raising them well, including ‘telling’ from an early age, is important and likely to be preventive in terms of actual trauma about their origins (although I know some donor conceived adults would hotly dispute this) but I do think we respect their autonomy by giving them the choice of more information and contact. We can never know how our children are going to feel about their conception by donor. Identifiable donors leave the choices in their hands.

  3. RachelP says:

    I’ve not read the whole report yet but in what I have read the line that got to me most was “Donor-conceived people have a responsibility, commensurate with their age and understanding, to do their best to understand the reasons why their parents chose to create a family through treatment with donated gametes, and why they made the decisions they did about disclosure: in short to be aware that parents, too, may be vulnerable”. That is a complete inversion of the parent-child relationship! It really doesn’t seem too much to ask that as a general rule our parents take care of us rather than the other way round. Statements like this reinforce the sense I have that I was created for my parents rather than for myself.

  4. oliviasview says:

    I too thought this was extraordinary Rachel and am sorry I didn’t mention it in the blog. Thank you for pointing it out.

  5. Sonia Allan says:

    I agree Rachel P. A DC friend of mine said that the statement you refer to was also really condescending to DC people. I again agree. The Nuffield Council Report basically suggests that where non-disclosure has occurred DC people should accept that their parents lied to them, suck it up, and live with the consequences, whether or not such decisions have deeply impacted upon their own lives… The position that non-disclosure is not dishonesty but rather a choice not to disclose personal information — ludicrous! Be it this rather twisted use of language or their attempt to engage with the difference between the language of ‘interests’ or ‘rights’, it seems that the Nuffield Council of Bioethic’s has not only missed the point, but has gone further to reaffirm the position that the interests and/or rights of DC people should be treated as secondary to those of everyone else involved. How very disappointing! I beg to disagree.

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