Why more rather than less information is better in egg donation

I’m often late at catching up on research so I was glad to have drawn to my attention a small study of women either waiting for egg donation or already with children conceived in this way.  It’s called To know or not to know?  Dilemmas for women receiving unknown oocyte donation and was published in Human Reproduction in April 2012 (full ref below).  The aim was to provide insights into the reasons for choosing an unknown egg donor and to explore recipients’ feelings and wishes regarding donor information.  It was the latter aspect that really caught my eye.  All the women (heterosexual and in partnerships) had chosen to have an unknown but identifiable (for those conceiving in the UK) donor, two turning down offers from relatives to donate.  One woman was not very fond of her sisters, both of whom had said they would donate.  Another could not bear the idea that someone else could at some point lay claim to her child.  Apart from one woman who went to the States in order to have a large amount of information about her donor, all the others were very ambivalent about how much they wanted to know.  Knowing about the donor seemed to make her feel more real and this can be very painful for someone who may be feeling ‘less of a woman’ because she is unable to use her own eggs.  One woman’s impulse was to minimise her knowledge about the donor as a self-protective mechanism in order not to disrupt a feeling that it will be ‘her’ baby.  But not having much information also led to considerable speculation about who this woman could be…’What if she’s really ugly?”  “The donor might look strange, have a beaked nose or something odd”.  In the absence of information that might normalise and humanise the figure of the donor, there was a tendency for her to be imagined in black and white form.  Participants also conjured up idealised pictures of their donors, as a counter to the negative image.  For instance, one woman imaged her donor as an Earth Mother figure.  In contrast, the woman who had a lot of information about her donor said that she would have been much more anxious during pregnancy without it.

All this changed once a baby had been born.  “…these kind of anxieties were quickly dispelled and all the participants with babies spoke of strong loving feelings towards their newborns.  Any earlier fears about whether they would feel like the real mother were also not realised.  The physical process of producing a baby and the ease with which these participants bonded with their newborns gave rise to a strong sense of identity as the baby’s mother.  However, this does not mean that they did not think about the donor, as she was present in their thoughts.  They imagine what she is like as a person when they perceive particular qualities in their children.  They all felt that they might see the donor in their child.”

All the women who had actually given birth at the time of the research wished that they had more information about the donor to share with their child.  One of the women who had turned down her sister as a donor now wished that she hadn’t.  They found that the basic information of height, hair, skin and eye colour that had absolutely been enough for them at the beginning of the process was now not sufficient.  Everyone was committed to being open with their child but having little information to share made some more ambivalent about this, feeling that it would not be fair to the child to tell them without having more information.  One woman said, “I can feel guilty, the responsibility isn’t it, you’re creating life outside of yourself really and I think you have a duty of care in a way and a duty to give her as much information as possible”.  Another raised a concern about whether her son might question their decisions, “I just have to hope that we can explain it to him in such a way that he understands why we made the decisions we did and that we will have a good enough relationship with him that he feels OK about that.”

Following the birth of a child most of the participants in this study wondered what kind of a person their donor was and found it hard to personify her.  The lack of information is felt at this point to be a disadvantage and is something that might become an impediment to disclosure.  One of the reasons why not having details about the donor may be important is because it is difficult to construct a narrative around little or no information.  Stories or narratives are one of the ways in which we all make sense of our lives and experiences.  Narratives can be particularly important in helping people deal with ambiguous experiences and form an important part of navigating life transitions.  A de-personalised donor is difficult to fit into a narrative because it is hard to imagine what kind of person she is.  In the absence of actual information the donor can be imagined to be part of a fairy story and the little that is known can also assume increased significance.

As the discussion at the end of this paper concludes, this study along with others, shows that the process of giving birth (and actually parenting a child) is transformative.  “Having a real baby as opposed to a desired baby, gives rise to a marked shift in attitudes and a different perspective for oocyte-recipient mothers.”  “…the amount of information that is available may be a determinant of the whole experience for the recipient.  It also demonstrates the scope for attitudes to donor information to undergo change over the course of treatment.”

Although this study was only small (11 women took part) it allowed in-depth exploration of thoughts and feelings that would not be possible with a larger number of participants.  Generalisation to all egg donor recipients should not be attempted because of the small sample size, but my experience of talking with many, many egg and sperm donation families is that the change in approach to information over time is absolutely typical.  Before pregnancy and birth it is all about the woman or man (couple) concerned, after birth it is about the child and what they might need to make sense of their world.

The implications for improved preparation for donor conception parenthood are enormous.  I will certainly be taking the messages of this research into my session with the 18 people attending a DC Network workshop on just this topic at the weekend.

To know or not to know?  Dilemmas for women receiving unknown oocyte donation     S.J. Stuart-Smith, J.A. Smith and E.J. Scott                                                                                                 

Human Reproduction Vol.27, No.7 pp.2067-2012



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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3 Responses to Why more rather than less information is better in egg donation

  1. Kriss Fearon says:

    Interesting review, thanks.

    I’ve been following Tina Malone’s story (pregnant by Cypriot egg donor at 50). She said that she went abroad because she didn’t want the donor turning up on her doorstep at some point in the future. You have to wonder who was counselling her, to have got such a basic fact wrong, but it does suggest that fear of displacement. Talking to a donor could have dispelled that fear.

  2. Anna says:

    The latest DSR research also shows that around half of those parents who conceived using an anonymous sperm donor now wish they had used an open ID donor. I can’t remember off the top of my head – but I believe this held true whatever the family type. Anyway: check it out below.

    Here’s the link: http://dx.doi.org/10.1016/j.rbmo.2013.07.009 (pdf of paper)

    (2013 Reproductive BioMedicine Onine: A SURVEY OF 1700 RECIPIENTS OF DONOR SPERM: the views of women who formed their families using donor sperm. Reproductive
    BioMedicine Online (2013)).

    Much, much bigger sample.

  3. marilynn says:

    I think it is fascinating that nobody ever even thinks about the fact that the anonymous woman could be her husbands own sister or cousin or second cousin or third cousin. He’s choosing a woman presumably of his own race and religion living in the same region as him, the kind of woman that may have similar talents and what not as his own family. If it’s his sister’s daughter then the name would not be the same. This is of course true for sperm donors as well with the females they reproduce with. Everyone is so hyper focused on donor offspring being the most likely to inbreed in reality they are the most likely to be inbred as well. After all their parents never saw one another before deciding to have a child together and with all the genetic tests performed the most important one would have been to make sure they were not closer than 3rd cousins related. It is a real problem obviously a real risk when people either are misled about who they are related to and don’t know that they are dating a relative or if they deliberately blind themselves to the individual they have children with it’s also going to be a risk. So I’d think not wanting an anonymous donor for that reason alone would be huge. That or make sure they are not related to your spouse that is the one mating with them. They sure won’t be dealing with the fall out if there is a congenital deformation or heritable disease amplified by inbreeding.

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