“You are not ready to be a mum if you are not listening to a medical professional say it is not safe” How ‘reproductive responsibility’ affects family-building choices in women with Turner Syndrome
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Talk at EASST 2018 on the topic of 'reproductive responsibility’ = the perceived reproductive decisions and obligations that follow from a diagnosis of Turner Syndrome. Looks at the way TS affects reproductive choices, and how women weigh the choices and evaluate risk.
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“You are not ready to be a mum if you are not listening to a medical professional say it is not safe” How ‘reproductive responsibility’ affects family-building choices in women with Turner Syndrome
- 1. “You are not ready to be a mum if you are not listening to a medical professional say it is not safe” How ‘reproductive responsibility’ affects family- building choices in women with Turner Syndrome Kriss Fearon
- 2. Introduction • Reproductive decision making in families affected by Turner Syndrome (TS) • Reproductive responsibility, focusing on two aspects: – Risk in reproductive choices – Maternal egg freezing • Role of gender
- 3. Implications of TS • TS is: – A non-heritable x-linked chromosome disorder. – 90% of girls have no ovaries or they are not functioning by puberty – A spectrum; varies greatly • Reproductive issues – Risks during pregnancy and at birth (pre-eclampsia, aortic dissection) – Higher rate of miscarriage (up to 40%)
- 4. Family-building preferences Full genetic link and gestation Full genetic link, no gestation Partial genetic link and gestation Partial genetic link, no gestation No genetic link and gestation No genetic link, no gestation Artificial eggs • ED with partner sperm – keeps link with partner • Family ED with partner sperm – keeps link with family and partner • Keeps link via pregnancy • Avoids ‘risks’ of adoption • Surrogacy with ED – keeps genetic link with partner • Avoids the risk of pregnancy/birth • Gives the same genetic relationship as ED for single women • Avoids the risk of pregnancy/birth • Cost of repeated IVF/risk of failure • Preferred by partner/Ethical reasons • ED with donor sperm – keeps link via pregnancy van der Akker 2007
- 5. Risks of ARTs • Close to ‘normal’ experience of motherhood • Child genetically related to partner • Emotional risks of not trying • Potentially serious physical risks • High risk of failure • Financial strain • Strain on relationship
- 6. Situational decision making “I remember being like very passionate about this, I really stuck to my guns about it from the age of 13, adoption all the way, 100%, until I met my partner and he screwed it all up [laughs]. […] when you are 13, you don’t think about who the other person is going to be in that scenario. […] As soon as my partner heard that he said ‘yeah no, you’re not carrying the child, because it is not worth you not being there to raise the baby’. [laughs] [...] He was like, ‘I would lose so much respect for you if you demand to do this. Because you would be putting your own desire over mine, your family’s, and your future children. It’s suggesting to me to you are not ready to be a mum if you are not listening to a medical professional say it is not safe.’”
- 7. Impact on the wider family • “She was like 'do you realise the risk to yourself, do you have any idea'- kind of thing. To be honest, I hadn't, really, until that point.” (Sister of woman with TS) • “I said to her, ‘we nearly lost you that night, and those twins don’t need to lose you, and so you should not put yourself through it again’, and that’s all I can say to them.” (Mum of woman with TS)
- 8. Maternal egg freezing • Chance of a genetically related child • Insurance - eggs will be available • Adds to the range of choices for women with TS • Confuses genetic and social relationship • Potential obligation to use the eggs • Potential obligation to freeze
- 9. Reproductive security “I can remember thinking, how am I going to look her in the eye when she’s 20something or 30something and she says, ‘mum, no one’s doing egg donation. Have you seen the length of the waiting list?’ I found myself thinking, ‘I can’t look her in the eye saying, don’t worry, somebody will donate for you, if I don’t do what I can, when I can.’ [...] I’ve said that it’s not an obligation for her, it’s to give her a choice, it’s to level the playing field. [Son] might or might not want children; she might or might not want children. At least she’s got more of a chance because there are 11 eggs waiting for her.”
- 10. Investment for the future “I feel like I should be saving and investing in the future that she wants. [...] And with fertility it’s not just the money that you necessarily need, you might have to put a physical investment in there for her. [...] If I was to donate eggs it would be a physical investment, if she was to have her ovaries frozen it would be a physical investment, but there is a small timeframe to set that in place.”
- 11. Deciding against freezing • “I did the dutiful mum thing and I went and found out about it, and I was just 36 at the time, and I missed the cut-off and I must say I was relieved. […] That was my reaction, ‘thank goodness’, because really, in my own head, I thought that that was just a little bit going too far.” • “We looked at that and we considered it properly and what we decided was the odds of our daughter managing to have a healthy baby at the end are only 1/8 when you factor everything in. [...] We decided that we were better keeping our money to help her when the time comes.” • “I have mixed feelings because if she ever comes to me and says, ‘why didn’t you do that?’, it’s too late. You then haven’t given her that option.”
- 12. Generational confusion • “What always concerned me was… It’s like me having a child with my son in law and that… yeah, I’m not sure if that kind of sat right with me.” • “I can see why they would do it, I get why they would do it, but no, because you’re kind of giving birth to your own sister then.”
- 13. Expectations of mothers • Egg freezing is framed as ‘natural thing for mums to do’ – ‘I can understand why it’s being done because as a mum you probably just go, I want to do everything I can to help my daughter have as close to what most of us do as possible. That child would be related to her and she’d get to be pregnant and she’d get to do all of that.’
- 14. • Supports existing research identifying responsibility as relational and situational, but raises many other questions: – Where does this pressure on mothers come from? – How does this relate to other research on the role of mothers who have children with compromised fertility, eg childhood cancer? – How do these issues affect fathers and male children? Conclusions
- 15. Alvarez, B., 2018. Reproductive Decision Making in Spain: Heterosexual Couples’ Narratives About How They Chose to Have Children. Journal of Family Issues, p.0192513X18783494. Arribas-Ayllon, M., Sarangi, S. and Clarke, A., 2008. Managing self-responsibility through other-oriented blame: Family accounts of genetic testing. Social Science & Medicine, 66(7), pp.1521-1532. D’Agincourt‐Canning, L., 2001. Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics, 15(3), pp.231-247. Faircloth, C. and Gürtin, Z.B., 2017. Fertile connections: Thinking across assisted reproductive technologies and parenting culture studies. Sociology, p.0038038517696219. Hallowell, N., 1999. Doing the right thing: genetic risk and responsibility. Sociology of Health & Illness, 21(5), pp.597-621. Nordqvist, P., 2017. Genetic thinking and everyday living: On family practices and family imaginaries. The Sociological Review, 65(4), pp.865-881. Novas, C. and Rose, N., 2000. Genetic risk and the birth of the somatic individual. Economy and society, 29(4), pp.485-513. Raspberry, K. and Skinner, D., 2011. Enacting genetic responsibility: experiences of mothers who carry the fragile X gene. Sociology of health & illness, 33(3), pp.420-433. Reed, K., 2009. ‘It's them faulty genes again’: women, men and the gendered nature of genetic responsibility in prenatal blood screening. Sociology of health & illness, 31(3), pp.343-359. Weiner, K., 2011. Exploring genetic responsibility for the self, family and kin in the case of hereditary raised cholesterol. Social Science & Medicine, 72(11), pp.1760-1767. Selected bibliography
- 16. • Visit our website: www.dmu.ac.uk/CRR • Follow @CRRDMU for updates
Editor's Notes
- Grounded theory approach using photo elicitation interviews with 30 participants, 19 women with TS and 11 mums of girls with TS looking at how reproductive choices in families affected by TS Talk will cover 'reproductive responsibility’ = the perceived reproductive decisions and obligations that follow from a diagnosis of TS – talk about the way TS affects reproductive choices, and how women weigh the choices Looks at women’s perceptions of risk, and how the risk is one of a number of factors in their choice and affected by their relationship to others as well as their health Look at the example of maternal egg freezing to think about the way new reproductive technology changes the way mothers perceive their parental obligations to their daughter
- TS is a spontaneous chromosome disorder – not heritable. So reproductive responsibility in this context refers to the way women approach their reproductive choices, particular where they carry a physical risk and may affect other such as their partner, children or wider family. Most women with TS are diagnosed as children meaning parents are faced with the issue of what they might do to protect their daughter’s reproductive potential. TS is a growth disorder – women tend to be small. Use of growth hormone and oestrogen makes the pregnancy and womb environment safer and ensures she is large enough to safely carry a pregnancy later in life Risks depend very much on the individual as TS is a spectrum, so some women may not have hypertension or heart problems and consequently might have the same risk as any other woman
- Begin with an overview of my participants’ fertility preferences Using van der Akker’s spiral of fertility preferences for infertility patients, with my participant’s preferences mapped against it – a convenient way to show how risk and other factors affect reproductive preferences Similar findings to other research on reproductive preferences, pregnancy is seen as a way of bonding the mother and child and an experience most women would like to have A full genetic link was usually not possible although several women said that they would use ovaries created from stem cells or their own skin cells if it was possible Diagram shows how a preference for a genetic link to both parents affects women’s reproductive choices in the context of the risks associated with pregnancy The decision to choose adoption over ED is influenced by physical risk of pregnancy and the costs/failure rate of IVF but adoption is also seen as emotionally risky – risk of family breakdown, of having a stressful relationship with a child Where women are considered socially responsible for the health of the pregnancy and of children, considering the risks is a way for women to enact responsible motherhood Shows preferences of both women with TS and mums – exception is that some mums did not express a preference and said their daughter/her partner should choose when they are old enough to decide
- Summary slide shows the pros and cons of pregnancy via egg donation for women with TS, with the benefits balanced against the risks of treatment. My participants looked at risk as medical, financial and emotional so decision were made not based solely on a woman’s health but also on practical factors such as finances and emotional factors such as the stress of repeated IVF treatment, the stress of not being able to use IVF to get pregnant 4 women had done ED, 3 successful pregnancies, 1 went on to adopt 11 women considered ED and found out information, but not gone ahead yet, or could not afford fertility treatment (1 didn’t want children, 2 explored adoption, 1 undecided)
- Women with TS are usually diagnosed when they are too young to have a relationship or family and sometimes before they understand the implications of not being able to conceive naturally They have often thought about ways to have a baby long before it becomes an issue. This participant found out at the age of 2, and had a plan in mind for having a family from quite a young age. She had not anticipated that another person would be involved and she would need to take account of their wishes and preferences. Partner went to a medical appointment and discovered the risks – they wanted a child which was biologically his. So his attitude was that responsible motherhood is sacrificing something you want for not just your own good but the good of your partner, children and family, and listening to the advice of experts. Responsible motherhood is framed as choosing NOT to carry the child, as in women with genetically inherited conditions (eg Raspberry and Skinner 2011) They are looking at surrogacy rather than adoption again based on the partner’s desire to have a genetically related child.
- These issues are known in the literature and have been written about before – that this is not an individual decision but affected by the wider family. Where family support a woman through fertility treatment also comes with the feelings of responsibility. One might be to decide not to directly facilitate a high-risk pregnancy by becoming a sibling egg donor, and another might be to or to be outspoken about the risks and the feeling that family support might be facilitating a high-risk pregnancy. This woman’s sister had offered to be an egg donor but when she found out more about the treatment, became very worried about this due to the risk of sickness or death in pregnancy – the idea that she would be facilitating the risk by donating her own eggs – she began to rethink this as she would have felt responsible if the pregnancy had gone badly 2nd quote – a mum whose daughter had twins via ED and a very difficult pregnancy and birth. Supported her every step of the way but not prepared to support the couple through another pregnancy and wants them to adopt or foster instead. In theory women have reproductive autonomy but in practice there is pressure from a partner, parents and other family members who are involved to take a particular course of action.
- Maternal egg freezing – mums freeze their eggs for their daughter to use in later life. Not known how many women have frozen their eggs for their daughter’s use in later life – a very small number. Most participants were recruited via the TSSS and this community is well aware of maternal egg freezing - most participants are well informed about it and had discussed it with friends or family. At TSSS conference, some had talked to the mother who changed the law on the storage period for frozen eggs for medical use, or knew her daughter. A live issue. More choice is perceived as a good thing (but decision making issues) Will talk about the framing of egg freezing and the perceived obligation that might feel to use the technology – the ‘technological imperative’
- Maternal egg freezing could be felt as an obligation by some mums of girls with TS. A way of securing her daughter’s genetic and reproductive future daughter’s future by freezing eggs. Relating this back to the hierarchy of preferences this act gives women with TS the option closest to the top of the spiral – child would have a genetic link with its maternal relatives, daughter would have a pregnancy, birth and breastfeeding as they would in a natural pregnancy. Froze eggs when her daughter was 7 as she was around the age limit for donation. Timing important – as they were starting to plan for puberty this issue came up in the family and this was the end result. She feels that the frozen eggs don’t give her daughter an obligation to use them but other participants worried that women could feel this way.
- Investing in their daughter’s future by saving up for fertility treatment Theme that comes across from mothers is that they are constantly planning for the next issue they have to deal with, whether that is academic support at school, medical care, or fertility The ‘right time’ to think about fertility is much earlier for parents of a girl with compromised fertility. Parents who need to think years in advance about their daughter’s future wishes and balance that with what they need to do right now and can afford Where parents are able to save for their child’s education some women are now considering part of their role as a parent of securing their child’s future is planning for the options they might want – a natural extension of what many parents already do. Because reproduction through heterosexual intercourse is explained as a question of choice, the responsibility for the resulting children rests on the shoulders of those who decided. – Alvarez 2018 And maternal ED could be seen as an extension of that too – offering their daughter more options which she could then use or not use as she wished at the time. Ties in with the concept of ‘responsibilization’ where the individual has responsibility to solve a problem. This is not framed as an issue that the community can help resolve. Instead this mum is planning how she can secure her daughter’s future in the absence of any support. As with paying for education, egg donors might not be available, the NHS probably will not cover the treatment, so the solution falls back on the parents, mum in particular.
- First quote reflects the response of several mums who were uncomfortable with the idea of maternal ED but felt they should explore it anyway, or felt guilty for not wanting to do it. Women may feel pressure to take action because that is part of what a mum is supposed to do – even if it’s not something they think personally is a good idea for their family. Decision not to do it is framed as rational and a sensible use of resources, while they are making alternative provision that will help her in the same way Persistent fear was that whatever choice they made, it could make life harder for their daughter. Worries that their daughter will be angry that she didn’t do that – anticipating the possibility of blame and guilt for the decision – but also the feeling that she might be obliged to use the eggs because of the investment of time and money that had gone into collecting them.
- Discomfort with maternal ED was about partly about genetic and generational confusion. When I asked women with TS whether they would prefer a family donor or an anonymous donor, most preferred an anonymous donor because they felt it would make the family relationships too complicated. Tension between responsible motherhood and discomfort about sharing genetic material in possibly inappropriate ways.
- Obligation and responsibility is perceived as related to a person’s role within the family. (D’Agincourt Canning, 2006) – seen as a an extension of caring role of mothers to plan for their child’s future Expectations are not coming from women with TS who have equally mixed feelings about maternal egg freezing Maternal ED is one example of how people perceive the role-related obligations of mothers. Participants found it easy to explain why a woman would want to freeze eggs for her daughter even when they were against the procedure itself. Framed like this the mother’s good intentions are assumed, mothers are acting as responsible in securing their child’s reproductive future in the face of her genetic illness, and providing her with genetically-related eggs and the chance to get pregnant Mother who freezes eggs is passing on the gift of genetic relationship as well as motherhood. Three mums wanted to conceive another daughter to give a chance for sibling egg donation. Two mums with an unaffected daughter had introduced the subject of egg donation thinking it might be a future option. None assumed their unaffected daughter would become a donor but they strongly hoped this would happen. “I just thought life was so unfair when I couldn’t have any more – you see in the back of my mind I wanted a sister, so that they could donate eggs to [daughter].”
- This work extends existing work on reproductive responsibility by identifying additional ways in which mothers feel obliged to take action to secure their daughter’s reproductive future Is the pressure seen as part of the role of the mother, or our attitude to technology – as in Sarah Franklin’s work, the fact that the technology exists means people feel pressured to use it - In my research I will develop concepts around these issues. Or thinking about Faircloth and Gurtin’s work, is it part of the increasing trend towards parents, rather than the wider family, being seen as the only ones who can adequately care for their children? How are mothers, parents, being supported? Gap in literature on reproductive responsibility in parents of children who have compromised fertility caused by a non-heritable health condition Gap in literature on men