Earlier this year, at the European Society for Human Reproduction and Embryology (ESHRE) conference in Lyons, France, it was reported that Melanie Boivin, a Canadian woman, had decided to have her eggs surgically extracted and preserved for the later use of her daughter, who at this time was seven years old. Her daughter, Flavie, has Turner syndrome (TS), a chromosomal abnormality whose most noticeable effects are shortness of stature and failure to reach sexual maturity, or the onset of very premature menopause. (Some people with TS can conceive naturally, but only a very small percentage.)
Many of the newspapers that carried the story highlighted the fact that if Flavie eventually had a baby conceived with one of these eggs she would, in effect, give birth to her own sister. For those who did not share this concern, no further questions seemed to be raised. Indeed, many commentators praised Boivin for her altruism, and her clinicians, quoted in some of the news stories (1), described her decision as one instigated by motherly love. Boivin herself said that she simply wanted to extend her daughter's range of choices. There would be no suggestion that she should be obliged to use the eggs.
It is frequently said that there is no such thing as a free lunch. I would suggest that there is very rarely any such thing as a free egg. If one is offered something, it may come at some cost, perhaps even more so if it is offered by someone very close. The very act of offering creates a situation in which one has to decide to accept or to refuse. Refusing offers made by others, especially when this has involved the kind of sacrifices that egg-harvesting entails, is not to be done lightly.
In choosing to act in this way Melanie Boivin made a very public statement about her values: that having children is fundamentally important. If she did not think so, of course, she would hardly have taken such a step. But more than this, the fact of extracting and storing eggs for her daughter indicates that this value is something she expects her daughter will probably share. This is not a neutral act, but the expression of a belief about what constitutes a good life. This belief goes further than just the idea that having children is good. It seems to concern the importance of the genetic link in having children. Because of course Flavie, like any other infertile person, could seek to use donated eggs if on reaching adulthood, she found herself longing to start a family.
Donated eggs, as many of the articles on the case pointed out, are in short supply. There is currently a waiting list of several years. But then, Flavie is in some ways, in a rather advantageous position. She is only seven years old, and she already knows that she will probably be infertile. A waiting list of several years may be detrimental to a woman who in her late thirties discovers that she is infertile only through trying and failing to conceive. For Flavie, things must necessarily be different. Infertility will not come as a shock to her, and she may therefore plan her reproductive choices several years in advance if necessary.
Viewed from this angle, Melanie Boivin's gift of eggs offer Flavie no options she would not already have apart from the ability to have children who will share some genes with her mother (and therefore also with herself), and the option of making a relatively spur of the moment choice to reproduce, rather than having to plan several years in advance due to the scarcity of donated eggs.
Of course, the value of having children, and the importance of preserving genetic links are likely to be important to parents. Why else would they have children themselves? And what could be more natural than seeking to convey this to one's own offspring? Surely part of the reason we have children at all is to inculcate in them the beliefs and values that we ourselves hold dear. Melanie Boivin can hardly be regarded as sinister, unusual or culpable in this respect.
I do not believe Melanie Boivin was culpable, nor that her motives were reprehensible. Nevertheless, in focussing on the oddness of the idea that a woman might give birth to her own sister, as the primary, or only, ethical issue raised by the case, I think some important questions have been missed.
TS is a condition which affects people in many different ways, both physiologically and emotionally and psychologically. Girls with TS are less likely than their peers to form and maintain sexual relationships. They are also more likely to suffer from low self esteem and emotional difficulties (2). Some of these psycho-social problems are connected with the sense of being 'different' and of failing to meet social expectations concerning gender and sexual development. In one sense, giving people 'options' that might restore normality might be thought to be beneficial. But in another, perhaps it emphasises the assumption that to be acceptable as a woman, one must fulfil specific criteria.
Fertility can be a mixed blessing for any woman. There are the challenges of contraception as well as the risks of unwanted pregnancy and abortion. Pregnancy and childbirth come at a cost to women's health. Despite this, many women choose to have children, and again this is an expression of the high value placed on reproduction by many, or even most, people.
But the dangers of pregnancy and childbirth are significantly higher for people with TS. Whether 'natural' pregnancies are achieved, or donated eggs are used, there is a very high rate of complication. The miscarriage rate is high and patients need to be carefully monitored during pregnancy (3). Women with TS will usually have a smaller than average pelvis, making childbirth more onerous and increasing the chances that a Caesarean will be necessary. Pregnancy for people with TS is often complicated by cardiac problems that are a common feature of the disease. The risk of death during pregnancy is raised 100-fold, and TS is described as being 'a relative contraindication to pregnancy' (4).
The mother of a child with TS has two options with regard to the question of her child's fertility. Recognising the additional risks involved in having children for those with TS, she may attempt to raise her child to feel like a valuable person regardless of her reproductive capacity. Alternatively she may try by whatever means she can to preserve for her child the choice of having a child. If she adopts the latter course, she sends her child an implicit message about the importance of fertility and reproductive choice. A child in Flavie 's situation cannot help but be aware of this; will her mother's sacrifice impel her to opt for the increased risks of pregnancy? Things are rarely this straightforward. Freedom of choice is illusory; our reproductive decisions are likely to be influenced by parents, partners, friends, and society at large. But in the context of her mother's highly publicised sacrifice, and given that TS is associated with unassertiveness and overcompliance, Flavie's chance of making a free choice may seem illusory indeed.
Sources and References
2) McCauley E, Feuillan P et al. Psychosocial Development in Adolescents with Turner Syndrome
3) Abir R, Fisch B et al. Turner's syndrome and fertility: current status and possible putative prospects
4) The practice committee of the American Society for Reproductive Medicine, Increased maternal cardiovascular mortality associated with pregnancy in women with Turner Syndrome
5) Saenger P, Albertsson Widland K et al. Recommendations for the diagnosis and management of Turner Syndrome.