Project Launch: Reproduction in the age of genomic medicine: the emergence, commercialisation and implications of preconception expanded carrier screening.

Last Friday, the 24th February, saw the first advisory group meeting of the Centre for Reproduction Research’s (CRR) latest collaborative and interdisciplinary research project, which launched earlier this month: ‘Reproduction in the age of genomic medicine: the emergence, commercialisation and implications of preconception expanded carrier screening’. This 3-year study, funded by the Economic and Social Research Council (ESRC) and led by Dr Cathy Herbrand aims to investigate the emergence of expanded carrier screening (ECS) for preconception use amongst the general population and its implications.

‘Preconception expanded carrier screening (ECS)’ is a form of genome-wide screening used to find out if individuals are carriers of a genetic mutation that might be passed on to their children and cause genetic disorders. They differ from targeted carrier screening, which is usually used amongst families and communities who are at increased chance of certain genetic conditions (for example those at risk of passing on Tay-Sachs). Following technological innovation, ECS is now available to anyone who has the means to afford it and can test for multiple conditions, potentially several hundred simultaneously.

The desire to have a child free of genetic disease makes ECS a persuasive innovation with potentially considerable impact.  However, while demand for ECS is gathering pace, little is known about its implementation and the social, economic, ethical and policy questions it raises. Through a range of methods including: literature and policy scoping; stakeholder interviews; systematically mapping the provision, commercialisation and marketing of ECS in the UK; qualitative interviews with couples with no family history of genetic conditions who have used or intend to use ECS; and interviews with ECS providers, this study aims to contribute to public awareness and debate around ECS. It will also provide evidence for policymakers and professionals about how ECS interfaces with existing preconception services and screening, how it is marketed, how or if it should be regulated, the experiences of couples who might use it and its implications for individuals and society.

The advisory group brought together the nine team members, experts in the fields of medical sociology, bioethics, and genetic medicine as well as representatives of policy and professional bodies and patient associations, to prepare data collection and impact activities. It also provided the opportunity to start discussing a number of key sensitive issues surrounding this new screening technology.

During this first meeting, the group discussed a number of important contextual matters for the team to address, including: how a severe condition is defined, the extent to which options and issues differ at the preconception and prenatal levels, and the options available for couples in the event of a positive result. There was lots of food for thought and we very much look forward to starting interviewing medical professionals, policy makers, patient support groups and users of this technology in the coming months.

For more information about this project, please contact Cathy Herbrand on cathy.herbrand@dmu.ac.uk

Matching gamete donors and recipients in the Nordic context of transnational egg donation

Last year, Dr Riikka Homanen from Tampere University, Finland, joined the Centre for Reproduction Research as a visiting researcher. Dr Homanen has written a piece for us based on her Academy Research Fellowship project on fertility markets and industry. In this piece she will elaborate on the matching of gamete donors and recipients in the Nordic transnational gamete donation context of Finland.

Worldwide, a multi-million-euro, commercial industry is increasingly recruiting donors and surrogates, to meet the ever rising demand for cross border reproductive tissue and labour. Treatment for intended parents, which is unavailable at home due to a multitude of social, economic and legal barriers, is tailored for those able and willing to travel. 

Within the Nordic region, Finland is the destination for donor eggs. In fact, a great deal of the Finnish donor eggs go to these cross-border travelers. In 2020, 560 ivf treatment cycles were performed on non-Finnish residents. Of these, 545 were performed with donor gametes (National Institution of Health and Welfare 2021).

I myself have conducted research on gamete donation in/to/from Finland, carrying out ethnographic fieldwork, (consisting of observations, video-recordings, interviews and documentary material) in five different clinics and agencies over two time periods (2015-2017, and 2019 – onwards). In addition to mapping the markets, I also became interested in exploring the process of matching of recipient intended parents and donors within the fertility clinics and agencies.

Nordics travel to Finland for a donor match

Some intended parents travel long distances for donor gametes. However, not all travel trend toward faraway places. People also travel to places geographically and culturally close. Service in one’s own language, and imaginaries of standard of care make one feel safe(r) on travels to foreign places for treatments which may feel scary.

Often, intended parents seek for a donor match that will assure phenotypic resemblance with the infertile recipient, travel to countries where they perceive residents as kin nationals or ethnically/racially similar.

For example, one intended parent in my study expressed they would “be happy just with a white Finnish-appearing donor”.

The travellers are mostly from other Nordic countries, specifically Sweden and Norway, but also to a lesser degree from places such as Germany, Austria and Switzerland. Russia is also the country of origin of a relatively large group of travellers; however, Russians use their own gametes.

Matching recipient intended parents with donors

Globally, the national context determines how much say intended parents have in the matching process depending on the legislative framework, policy and care practices. In Finland recipient intended parents’ choice is restricted by legislation (Act on Assisted Fertility Treatments 1237/2006), physicians are responsible for matching recipient and donors based on appearance. This is broken down into five characteristics on which information can legally be collected and shared with the recipients: colour of the donor’s skin, eyes and hair as well as the donor’s height and ethnic origin. The law does not define “ethnic origin” in any way, which has on its own part led to a varied practice of classifying using nationality, old racial classifications, and geographical and ethno-cultural regions.

The notion of matching intended parents with donors derives from adoption practices, whereby policymakers and medical professionals have even regarded the lack of physical or other personal resemblance as a risk to the successful attachment between parents and child. This risk argument reproduces the ideal of a solid base of genetic kinship.

Finns as kin nationals

The intended parents in my study travelling from other Nordic countries viewed Finns as kin nationals whose ethnicity is perceived as inheritable. When I discussed the reasons for coming to Finland for egg donor IVF with Nordic fertility travelers, they mentioned the “Nordic look” or that “Us Swedes/Norwegians and Finns do look alike”.

Often in the same discussion they mentioned that they also liked the fact that there was a donor register, intended for the future children. This state maintained, donor identity register was established in 2007, allowing children born as a result of donor-IVF to receive identity information about the donor upon turning eighteen. When I inquired as to why the intended parents in my study liked the register they responded that this way the donors were “truly known”.

Intended parents, however, will not actually know much about the donor, only the future child. The register can then only really work as a guarantee of traceability and the known characteristics: eye color, hair color, height, skin color and ethnic origin. When I discussed this with the clinic staff, I was told that before the register the cross-border travelers had been particularly concerned that the donors might be Russian.

Interestingly then, Finns are seen as kin nationals, and Russians are not. This has not always been the case. Finns have not always been considered true Europeans or part of the “white race”, but have been spoken of as a dark people of Asian and Mongolian origin. Racial theories of Finns’ Asian and Mongolian origin have maintained the view of Finns as dark or yellow-skinned, brown-eyed, small, clumsy, less talented and less good-looking than true Scandinavians. The borders of (Nordic and European) whiteness are porous and in specific historical moments some people are allowed to enter into it.

Protecting (Nordic) whiteness by matching

During my fieldwork I observed a selective and exclusionary rationale behind matching donors and recipients in some of the clinics, built around whiteness: matches between donors with dark skin tones and recipients with fair skin tones were rejected, but matches could be made between donors with fair skin and recipients with dark skin. This logic is not new. The notion that ‘one drop’ of non-white blood makes a person ‘of colour’ but not the other way around has a long history. The exclusionary rationale behind matching is the logic of protecting the ‘purity’ of whiteness, but not brownness or blackness.

Therefore, in this particular historical circumstance, the whiteness of Finns is not questioned as it has been in other circumstances. Finns are strategically seen as Nordic, and even Scandinavian kin, and clinics reinforce the inheritability of this “Nordicness”, which involves notions of the “Nordic look”. The establishment of a state donor identity register has also been perceived as a guarantor of this kin-ness – especially of non-Russian kin-ness.

By Dr Riikka Homanen

This blog post is based on two articles published by Dr Homanen:

Homanen, Riikka (2021) Creatively becoming a family in the fertility clinic? Matching donors with non-heterosexual and single recipients in commercial care. In J. Mikats, S. Kink-Hampersberger, & L. Oates-Indruchová (Eds.), Creative Families: Gender and Technologies of Everyday Life. Palgrave Studies in Mediating Kinship, Representation, and Difference. London & New York: Palgrave McMillan.

Homanen, Riikka (2018) Reproducing whiteness and enacting kin in the Nordic context of transnational egg donation: Matching donors with cross-border traveller recipients in Finland. Social Science & Medicine 203: April 2018, 28–34. DOI: 10.1016/j.socscimed.2018.03.012

Recent publications at The Centre for Reproduction Research (CRR)

In recent months, a number of CRR members have published books contributing to discussions around male fertility, fertility in the context of endometriosis, and men’s involvement in family planning.

Associate Professor, Esmée Hanna, along with her colleague, Professor Brendan Gough based at Leeds Beckett University, recently published their joint book titled: (In) Fertile Male Bodies: Masculinities and Lifestyle Management in Neoliberal Timesas part of the special collection of books ‘Emerald Studies in Reproduction, Culture and Society’ edited by CRR director Professor Nicky Hudson in collaboration with academics at the University of Manchester.

Summary of the book

“Declining global male fertility rates generated increased attention on male fertility in recent years. Simultaneously, individualised responsibility for health has been growing. Fertility and lifestyle have therefore become seemingly intertwined.

Esmée Hanna and Brendan Gough examine men’s experiences of fertility and lifestyle practices, exploring personal experiences of the role of lifestyle in the quest for conception as well as the broader promotion of ‘lifestyle’ within both clinical and online material as a key aspect for ‘improving’ male fertility. Through the exploration of male fertility and lifestyle factors and their modification we examine the growth of healthism around infertility, the role of neoliberalism within this and how this intersects with masculinity. Using a new notion of liquid masculinity, we explore the fluid nature of societal and personal perspectives on the male infertility experience. In doing so we offer new insights into the now accepted idea that ‘sperm’ is malleable and that fertility controllable through personal choices, despite their being limited scientific evidence for such claims”.

For access options, please visit Emerald Publishing.

CRR members have also published chapters in a new edited collection ‘Technologies of Reproduction Across the Lifecourseby Dr Victoria Boydell and Dr Katharine Dow, which is also part of the special Emerald book series.

Professor Nicky Hudson and Dr Caroline Law published Chronic Uncertainty and Modest Expectations: Navigating Fertility Desires in the Context of Life With Endometriosis

Summary of chapter

“For the millions of women living with endometriosis, significant disruption to normative life expectations and a considerable impact on everyday life are common. Whilst for many women concerns about and experiences of infertility may be a central feature of life with the condition, little work has considered the impact that chronic illness has on reproductive decision-making or on the ways in which a medical condition is managed in relation to plans for conception. This chapter considers how heterosexual women with endometriosis and their male partners experience the intersection of fertility desires with the use of reproductive technologies (contraceptive and conceptive) and how these experiences intersect with the medical and surgical management of endometriosis. Three themes drawn from interview data are presented: the first considers how the uncertain and indeterminate character of endometriosis shapes imaginaries about future fertility, conception and childbearing. The second focuses on how endometriosis mediates expectations about the success of fertility treatments and technologies; exploring in particular the manifestation of low expectations in relation to possible success. The third theme considers how endometriosis and fertility pathways intersect, creating specific disruptions whereby fertility treatment may be delayed by endometriosis care, and where endometriosis care may be interrupted or paused by fertility desires. Our data show how endometriosis shapes reproductive desires, decision-making and experiences and has important implications for understanding how for those living with a chronic illness, plans for having children are made within a context of biographical and biomedical contingency”.

And, Dr Amanda Wilson published Men as Irrational Variables in Family Planning? Understanding the Landscape, Technological Advancements, and Extending Health Psychology Theories and Models

Summary of chapter

“Men are often considered by the health care system to be a disengaged accessory when it comes to family planning. In reality they act as an equal part in the reproductive equation. Despite qualitative research suggesting some men currently do take primary responsibility for family planning, men are further marginalised being classed as an irrational variable in large national datasets. Reports ignore men in general by failing to record basic demographics, for example, age is not captured and ethnicity has two options: white and non-white. This leaves little ability to analyse men’s family planning knowledge, attitudes and beliefs. Technological advancements have resulted in new forms of male contraceptive methods reaching phase III testing (from pills to gels), and the market is moving towards diversified options that will allow even more men to take primary contraceptive responsibility. Other advancements include the sexual enhancement product Viagra becoming available over the counter, and reproductive wellbeing apps have been created to allow men to test their fertility at home. Without research to understand the ever-changing landscape for men we are ill-prepared to understand what these new products and advancements mean for men’s role. Using various forms of publicly available online data and previous empirical research, this chapter will review men’s response to new contraceptives, sexual enhancement products, and reproductive wellbeing apps. The results will be discussed in relation to updating the Subjective Expected Utility (SEU) Theory, the Theory of Planned Behaviour and the integrated developmental and decision-making contraceptive models used by health psychologists”.

For access to either of these chapters, please visit Emerald Publishing.

CRR staff members, Dr Rowena Doughty and Dr Diane Menagé have published an academic textbook aimed at students and midwives: Introduction to Research for Midwives.

Summary of the book

“With an increasing expectation that all health professionals, including midwives, will base their practice on evidence, this popular book demystifies the world of research for midwives in the UK. Introduction to Research for Midwives is a highly regarded resource that helps the reader develop their research skills and guides them toward using evidence effectively in their clinical work. Written clearly and simply, it covers research methods and processes, critical evaluation of research, and application of research to practice. This book is suitable for both students and practising midwives, whether they are producers or end-users of research, or simply need to understand how to critique research articles and produce literature reviews.

•            Simple language, clear writing and structure – can be dipped into or read from cover to cover

•            Extensive guidelines on critiquing research articles and producing successful literature reviews

•            Student friendly – includes tips for producing successful assignments

•            New chapter on ‘How to Write an Undergraduate Dissertation’

•            ‘Conducting Research’ and ‘Critiquing Research’ sections in each chapter – suitable for midwives using research in different ways

•            Reflection prompts to encourage readers to engage with the narrative

•            Reader activities to enhance learning and understanding

•            Comprehensive and fully updated throughout

•            Glossary to provide clear explanations of research jargon

•            Linked to the NMC Standards and Proficiencies for Midwives, and can support professional revalidation”.

For access options, please visit Elsevier Publishing.

Furthermore, Dr Helene Mitchell and Dr Wendy Norton have published a joint chapter Psychological impact of infertility and ART procedures in Management of Infertility: A Practical Approach, edited by Dr Antonio Simone Laganà and Dr Antonino Guglielmino, examining the psychological and social implications of infertility and its treatment.

Summary of chapter

“The psychological consequences of people experience infertility and fertility related treatment can be significant and long lasting and have an impact across a number of life domains, including close relationships. It is therefore important that healthcare professionals ae mindful of this when interacting with people seeking treatment and ensure psychological care is routinely implemented as part of the patient’s treatment plan. In this chapter we provide an overview of the work on the psychosocial impact of fertility problems and the ways in which people adjust, the impact of fertility-related treatment and posttreatment implications, including the consequences of unsuccessful treatment”.

For access options, please visit Elsevier Publishing.

For more information on publications at the CRR, please sign up to the CRR mailing list.

By Jessica Turner

Doughty, R. and Menage, D. (2022) Introduction to Research for Midwives, 4th edn. Elsevier Health Sciences: London.

Hanna, E.S. and Gough, B. (2022) (In) Fertile Male Bodies: Masculinities and Lifestyle Management in Neoliberal Times. Emerald Publishing Limited: Bingley.                           

Hudson, N. and Law, C. (2022), “Chronic Uncertainty and Modest Expectations: Navigating Fertility Desires in the Context of Life With Endometriosis”, Boydell, V. and Dow, K. (Ed.) Technologies of Reproduction Across the Lifecourse, Emerald Publishing Limited, Bingley, pp. 83-99.

Mitchell, H. and Norton, W. (2022), “Psychological impact of infertility and ART procedures”,  Laganà, A.S. and Guglielmino, A. (Ed.) Management of Infertility: A Practical Approach, Elsevier Academic Press, London, pp. 387-393.  

Wilson, A. (2022), “Men as Irrational Variables in Family Planning? Understanding the Landscape, Technological Advancements, and Extending Health Psychology Theories and Models”, Boydell, V. and Dow, K. (Ed.) Technologies of Reproduction Across the Lifecourse, Emerald Publishing Limited, Bingley, pp. 225-246.

Welcoming in 2022-23: The CRR looks forward to another exciting year

After an enjoyable summer where members have taken well-earned breaks to rest and replenish, we at the CRR are excited to be coming back for another stimulating year.

To kick off this academic year, we hosted an event looking at male in/fertility and male contraceptives at the British Science Festival, hosted for the first time at De Montfort University. In the same week, CRR members attended the British Sociological Association’s Medical Sociology (Medsoc) annual conference, with members both convening the event and presenting work on egg donation and Turner syndrome.

Following a busy September, we look forward to October when our first visiting researcher of the year, Dr Riikka Homanen from Tampere University, will be joining us for three months. Riikka’s work explores social relations, such as kin, class, gender, sexuality and race/ethnicity, in (assisted) reproduction, and the marketization of reproduction and reproductive healthcare in particular. We are thrilled to host Riikka in the UK and look forward to hearing more about her work. Find out more about our visiting researcher programme and opportunities to come and connect with us here.

Our seminar series, which showcases work from both early career and established researchers and provides a forum for lively discussion and debate, will continue throughout 2022-23. To receive regular updates about this and other events from the CRR, sign up to our mailing list. We will also be continuing our programme of reading groups, to engage with developments in both reproduction studies and methodological literature; and writing groups, to provide peer support for both researchers writing for publication and for our PhD students. Alongside these activities to develop our research community, we will be progressing exciting bids we have in development, and pushing forward with our current and new research projects which you can read about here. In particular we are excited that this year will see the launch of our new three-year, ESRC-funded study into the emergence of expanded carrier screening for preconception use amongst the general population and the wider implications of reproductive genomic medicine – read more about the study background, aims and methodology here.   

In recent months, our members have published a number of papers and chapters including book chapters on navigating fertility in the context of endometriosis and men’s involvement in family planning, papers on pregnancy experiences of amputee women and on physical activity in pregnancy, as well as papers resulting from the National Maternity and Perinatal Audit including on adverse pregnancy outcomes for Black and South Asian women. As well as papers presented at Medsoc (see above) members have also recently presented papers on multi-parenthood at the ESHRE Annual Meeting; and on the use of expanded carrier screening, on Russian transnational surrogacy, and on intrafamilial egg donation and Turner Syndrome at the international conference ‘Reproductive Futures: Emergent Injustices, Hopes and Paradoxes’ at Tampere University. We look forward to continuing to disseminate our work and research findings in varied and innovative ways and to contributing to debate and discussion both within and beyond academia in the coming year.  

Summer 2022 also saw three of our members graduating with PhDs – huge congratulations to Kriss Fearon (whose graduation was delayed due to the pandemic), Sasha Loyal and Caroline Law. Also in summer 2022 we bid a (temporary) farewell to Sasha Loyal, Paris Connolly and Christina Weis who have all gone on maternity leave. In September 2022 we welcome Jess Turner back from a year of maternity leave. We also look forward to welcoming our new PhD student Sophia McCully and our new student frontrunner Leo Sawyers who will be working to support our activities, both of whom are joining us from October.

We look forward to connecting with colleagues and friends in the coming academic year: do get in touch or come and visit us..

‘Do the Nine’: Essentialised Womanhood and the reversing of Roe vs Wade

As surely everyone knows by now, the decades long constitutional right to abortion in the US was recently overturned by rescinding the precedent made in Roe vs Wade (1973) which set out the right of access to abortion. This outcome had been feared for years, and had been largely confirmed prior to the formal announcement, due to the leak of a draft of the majority court decision. Shortly after the leak, US comedian, Kate McKinnon, performed a sketch on Saturday Night Live in which she impersonated Amy Coney Barratt, the latest Trump Justice of the Supreme Court. The sketch focused on Coney Barratt’s line of questioning during the oral arguments for Dobbs vs. Jackson Women’s Health Organization in which she suggested that pregnancy should not be a concern, because of ‘safe haven’ laws – US laws that allow parents to hand over babies and young children without questions in designated places. As the sketch repeatedly mentioned, women should just ‘do the nine’, endure pregnancy, give birth and then give up babies that they cannot or do not want to raise. This understanding is rooted in essentialised ideas about women, motherhood and maternal sacrifice.

For most of those opposed to abortion, womanhood is synonymous to motherhood (Lowe and Page, 2022). Women are mothers, they are either destined for motherhood, have children, or unfortunately can’t have children but can perform ‘mothering’ in other ways. This essentialised understanding of motherhood also arises from, and reinforces, the idea that ‘good motherhood’ is sacrificial in nature, and whether in utero, born or even not yet conceived, the needs of children should always take priority. Hence the lives of women are always secondary when pregnant, and they should ensure to maximise the welfare of a foetus, by for example, refraining from eating certain foods, and stopping from drinking alcohol, despite the lack of evidence that low levels of alcohol consumption has a negative impact on the developing foetus (Lee et al., 2022). In contrast, the putative ‘bad mother’, needs to be subject to discipline and sanctions, up to and including criminalisation (Flavin, 2008). In the US, there have been cases where pregnant women using prescribed medication have been charged with endangering their foetus.

The ultimate sacrifice that women can made for potential children is of course to reject abortion and proceed with a pregnancy, regardless of the impact on their health, welfare, and lives. The anti-abortion position can include, refusing abortions to child victims of rape, or risking sepsis when women are having a miscarriage by refusing to give treatment even when there is no possibility that the pregnancy is still viable. Whilst these examples illustrate the life-threatening cruelty of the anti-abortion position, it is also important to remember that pregnancy has a profound biological impact on the body, even in the most straight-forward of pregnancies. Not only are there a huge number of physical implications, from waves of nausea, pressure on the bladder, to difficulties in climbing ladders or even cutting toe-nails. Visibly pregnant women also become subject to public scrutiny, with any apparent deviation from ‘acceptable’ behaviour being open to public criticism from family, friends, and the general public (Lowe, 2016).

Moreover, the suggestion that abortion is no longer needed also ignores the evidence of what happens when abortion is inaccessible.  The Turnaway study found that women denied abortions did not usually relinquish their babies, but it did have a negative impact on their income and employment which also affected their other children (Foster, 2020).  Adoption is also often problematic and leaves birth mothers with feelings of grief and loss (Coleman and Garratt, 2016). It can also have a profound negative impact on children, especially if the adoption breaks down and children are moved to foster care (Goodwin and Madden, 2020).

The rolling out of abortion bans across different states in the US will lead to a worsening of health inequalities around social class and ethnicity. The more affluent will be able to travel  (https://www.abortionfinder.org/ ), or be able to safely navigate ordering abortion pills on line (https://www.plancpills.org/). Whereas the costs to low income families, who are disproportionately people of colour, will be huge. The US already has one of the worst rates of maternal mortality in the developed world (MacDorman et al., 2021), maternity leave is often not guaranteed (Jou et al., 2018), and the disproportioned number of Black children removed from their families (Dettlaff and Boyd, 2020) is likely to increase.

‘Doing the nine’ means regardless of your situation, if pregnant, you are ‘sentenced’ to enduring the physical and emotional impact of pregnancy, and subject to constant judgement, no matter what the impact on your health and wellbeing. It also reaffirms the ideas that women are mothers, and motherhood means actual or potential children come first. This is likely to impact all pregnant people whether or not they want an abortion. 

 

By Dr Pam Lowe

You can read more of Dr Lowe’s work on anti-abortion activism in the UK in her new book here

‘Anti-Abortion Activism in the UK: Ultra-sacrificial Motherhood, Religion and Reproductive Rights in the Public Sphere’

 

 

Coleman, P.K. and Garratt, D. (2016), ‘From birth mothers to first mothers: Toward a compassionate understanding of the life-long act of adoption placement’, Issues L. & Med., HeinOnline, Vol. 31, p. 139.

Dettlaff, A.J. and Boyd, R. (2020), ‘Racial disproportionality and disparities in the child welfare system: Why do they exist, and what can be done to address them?’, The ANNALS of the American Academy of Political and Social Science, SAGE Publications Sage CA: Los Angeles, CA, Vol. 692 No. 1, pp. 253–274.

Flavin, J. (2008), Our Bodies, Our Crimes: The Policing of Women’s Reproduction in America, New York University Press, New York.

Foster, D.G. (2020), The Turnaway Study: Ten Years, a Thosand Women, and the Consequences of Having – or Being Denied – an Abortion, Scribner, London.

Goodwin, B. and Madden, E. (2020), ‘Factors associated with adoption breakdown following implementation of the Fostering Connections Act: A systematic review’, Children and Youth Services Review, Elsevier, Vol. 119, p. 105584.

Jou, J., Kozhimannil, K.B., Abraham, J.M., Blewett, L.A. and McGovern, P.M. (2018), ‘Paid maternity leave in the United States: associations with maternal and infant health’, Maternal and Child Health Journal, Springer, Vol. 22 No. 2, pp. 216–225.

Lee, E., Bristow, J., Arkell, R. and Murphy, C. (2022), ‘Beyond ‘the choice to drink’in a UK guideline on FASD: the precautionary principle, pregnancy surveillance, and the managed woman’, Health, Risk & Society, Taylor & Francis, Vol. 24 No. 1–2, pp. 17–35.

Lowe, P. (2016), Reproductive Health and Maternal Sacrifice: Women, Choice and Responsibility, Reproductive Health and Maternal Sacrifice: Women, Choice and Responsibility, Palgrave Macmillan, Basingstoke, available at:https://doi.org/10.1057/978-1-137-47293-9.

Lowe, P. and Page, S.-J. (2022), Anti-Abortion Activism in the UK: Ultra-Sacrificial Motherhood, Religion and Reproductive Rights in the Public Sphere, Emerald Group Publishing Limited, Bingley.

MacDorman, M.F., Thoma, M., Declcerq, E. and Howell, E.A. (2021), ‘Racial and ethnic disparities in maternal mortality in the united states using enhanced vital records, 2016‒2017’, American Journal of Public Health, American Public Health Association, Vol. 111 No. 9, pp. 1673–1681.

Celebrating the first five years of the Centre for Reproduction Research

We are proud and excited that this month we celebrate the first five years of the Centre for Reproduction Research (CRR) at De Montfort University (DMU). Since our launch in 2017, we have seen our academic community grow and flourish with the addition of new members, new students and a range of projects, collaborations and partnerships. Here we take the opportunity to give you a whistle-stop tour of some of our achievements; reflecting on our ambitions and where we find ourselves in 2022.

The launch of our research centre in 2017

Understanding the complex landscape of reproduction

A central feature of our intellectual mission at the Centre is to consider reproduction across the lifecourse; exploring the complex interplay between a range of reproductive processes, practices and events. The result is a varied and novel set of projects which address a number of theoretical, empirical and policy questions. Reproductive health remains a key priority for global policy organisations and nation states – exemplified by the challenges posed during the Covid-19 pandemic – and our work aims to improve access to and quality of reproductive healthcare, address issues of inequalities and injustice, and better enable people to pursue their reproductive hopes and to manage their reproductive disruptions. 

Our membership spans several disciplines across the social and health sciences, allowing us to collaborate in interesting and impactful ways, and to develop new multi- and interdisciplinary methodologies and tools. A number of themes have developed from our work, which both respond to and shape key areas of concern and interest in the field of reproduction studies.

Our research on fertility, fertility treatments and new family forms interrogates the socio-technical conditions under which parenthood is enabled, as well as the lived experiences of established, new and alternative routes to parenthood. Projects include our recently completed ESRC-funded EDNA project on egg donation in the UK, Belgium and Spain, our new collaborative ESRC project with Manchester University on direct-to-consumer genetic testing and donor-conception, as well as projects exploring co-parenting arrangements amongst LGBT communities and men’s experiences of surrogacy and family planning. This theme also includes research on mitochondrial donation: so-called ‘three-parent IVF’, and an emerging body of work focused on reproductive health in China. We have also recently written on the impact of the war in Ukraine for surrogacy workers in the region.

The growing significance of reproductive ageing and temporalities including questions of reproductive ‘delay’ and timing are represented by our programme of research on egg freezing – central to the recent ‘Extend the Limit’ campaign to increase storage time limits for eggs, sperm and embryos in the UK – and more recently, work on both social sperm freezing and heterosexual men’s engagement with contraception. Our researchers are also exploring questions of reproductive timing amongst British men who want to become fathers and British South Asian women.

We have a growing body of work dedicated to the intersection of chronic living and reproduction – including studies into endometriosis, mitochondrial disorders, Turner Syndrome, and people living with amputation – which illuminate the complex and often underacknowledged ways in which genetic, chronic and long-term conditions intersect with, configure and shape individuals’ reproductive trajectories and pathways.

Questions of service delivery and care continue form part of our agenda to create research evidence with which to improve and enhance reproductive and midwifery care. This includes our important and on-going collaboration with the National Maternity and Perinatal Audit and NIHR-funded research into factors influencing the utilisation of midwifery units. We have also completed work to adapt and validate the Reproductive Coercion Scale (a screening tool for health professionals).

Our research explores questions of equality, inclusion and social justice; with projects exploring Black and minority ethnic women’s experiences of maternity care during the Covid-19 pandemic, gay men’s experiences of parenthood through surrogacy, and heterosexual men’s experiences of pregnancy after fertility treatment. An emphasis on men’s reproductive experiences, as an often over-looked group in this field, is a particular focal point.

The fast-evolving digital healthcare landscape and its implications for and intersections with reproduction, continue to necessitate new empirical explorations and theoretical understandings. Our work on the digitisation of reproduction includes a focus on the on-line presence of direct-to-consumer providers, the marketing of genetic testing, donor-conception and new forms of male contraceptives and the burgeoning use of social media and online patient fora. This important social shift signifies the need for scholarly, critical and theoretically informed scrutiny.

Social justice and social impact

At the heart of our work sits a commitment to ensure our research has real-world impacts and advances social justice. Our growing resource library is designed as a one-stop-shop for our information and educational materials. The Centre also now hosts the Leicester Cloth Nappy Library  which is providing support to new parents, as well as a nursery, to reduce their waste by switching to reusable cloth nappies – saving nappies from landfill across the city.

In connection with the Decolonising DMU project, and the wider socio-political agenda to address and actively tackle racism, racialisation and discrimination in all its forms, we have begun work to decolonise our own practice as researchers and scholars and, as part of this, to contribute to the decolonisation of reproduction more broadly. In 2021 we ran an event: ‘Decolonising Reproduction’ for DMU staff and students, which considered the impact of colonialism, racialisation and racism on the provision of reproductive healthcare. CRR members have been leading practice change around decolonising midwifery education with educational resources to advance this published in The Practicing Midwife. Decolonisation is also the central theme at this year’s British Sociological Association’s Human Reproduction Study Group conference, hosted annually at DMU.

Our commitment towards equality, diversity and inclusion principles is also reflected through our involvement with equality initiatives within De Montfort University. CRR members lead the DMUWomen network, the School of Applied Social Science’s Athena Swan assessment team and are represented on the Faculty of Health and Life Sciences equality and diversity committee, where they are contributing to developing appropriate actions promoting equality for all staff and improved wellbeing and career development in academia.

When the Covid-19 pandemic hit, we identified a need for collective understanding about the impact of the virus – and global responses to it – on reproductive health, choices and rights. CRR members created the ‘Covid-19 and Reproduction Digest’ to capture the developments and build up a reference library for use by all reproduction researchers. The Digest includes news articles, empirical research, commentary work, blog posts, advice and guidelines, petitions and calls for research contributions and participants. We also ran an event on Covid 19 and reproduction in 2021.

The expertise of our members has been utilised in national and international policy groups and committees. Members have provided evidence and expertise to: the Belgian National Advisory Committee on Bioethics; the European Society for Human Reproduction and Embryology; NICE; the Royal College of Nursing; the British Fertility Society Law, Policy and Ethics group; the Associated Fertility Societies group; the Critical Contraceptive Network as well as board representation on local sexual and reproductive health charities.  

Developing the reproduction studies community

We pride ourselves on being committed to providing support and mentorship to early career researchers including PhD students. Over the past five years we have supervised the work of a group of excellent doctoral scholars whose topics include: egg freezing, surrogacy, menopause, Turner syndrome and reproductive decision-making, reproductive ‘delay’ and timings, experiences of premature ovarian insufficiency, ending fertility treatment, male experiences of fertility treatment, female genital cutting, and obesity in pregnancy. Two of our PhD students have been the recipients of the Foundation for the Sociology of Health and Illness’s prestigious Mildred Baxter postgraduate fellowship and two members have published monographs within the Emerald Book Series on Studies in Reproduction, Culture and Society (co-edited by CRR members) one of which was shortlisted for the FSHI 2021 book prize.

We also host a series of placements and internships for undergraduate and postgraduate students, and our recently established CRR dissertation prize seeks to recognise and honour excellence in DMU undergraduate students’ investigations pertaining to research and fertility.

We have established a programme of activities to enable the exchange of ideas, discussion and debate, to enhance understanding and to foster professional development, including an annual conference (this year, back in person on 19 May 2022!), a seminar series, a reading group, two writing groups, and until 2020, an annual writing retreat – something we hope to return to with the easing of Covid-19 restrictions. Our visiting researcher scheme has attracted visits from scholars from across the UK, as well as France, Germany, Switzerland, the US, Belgium, Canada, Austria, Cyprus, and Spain.

Looking to the future

Thank you for reading about our work and, if you’ve followed us for a while, for your on-going support and interest. When we launched the Centre in 2017, little could we have imagined what an uncertain world we would be writing from in 2022. The Covid-19 pandemic, global conflicts and humanitarian crises, including the recent war in Ukraine, have left us all feeling a growing sense of unease and uncertainty. These shifts have entrenched stratifications and given rise to new and concerning questions about global reproductive health. We hope that the next 5 years brings more peace, greater equality and understanding, and some sense of certainty and stability.

We welcome you to connect with us as we continue on our journey – follow us on Twitter (@CRRDMU), Instagram (@CRR_DMU), via this blog or by joining our mailing list – we would love to hear from you – or even better, come for a visit! For more information about our members and their work please visit our website.

When obtaining a diagnosis of endometriosis becomes a struggle: a brief anthropological look at Catalonia.

In honour of endometriosis awareness month, our visiting researcher Vanessa Mantilla Salazar from Autonomous University of Barcelona has written a piece for us based on her doctoral research on ‘therapeutic itineraries’ of women with the condition.

In much of the Western context, pain and discomfort in the menstrual cycle has been “normalized”, which has led to the invisibility of several gynaecological diseases linked to this process. This is the case of endometriosis, a disease related to the menstrual cycle that affects women of reproductive age, from any social or ethnic group.

From the medical perspective, it consists of the growth of endometrial tissue outside the uterus and usually manifests with symptoms such as severe pain during menstruation, pain during sexual intercourse, as well as infertility, physiological dysfunction, and a significant reduction in quality of life (Guidone, 2020; Carmona, 2021). In addition, there is the challenge of diagnostic delay, which is estimated to take between seven and ten years from the onset of symptoms to the final diagnosis (Carmona, 2010).

Although there are no exact data, it seems to have a high prevalence as it is estimated that in Spain 10% of women suffer from it, which means that there may be around two million people affected (Carmona, 2021). Within the Catalan territory we therefore might estimate that of about two million women of reproductive age, about 200,000 women would suffer from the disease.

As a result of this context, in Spain the last ten years have seen the development of different endometriosis guidelines for the management of endometriosis by public health institutions to improve the effectiveness of treatment and approach to this condition.

The management of endometriosis in Catalonia: a brief overview

Spain’s healthcare organization includes the National Health System as an entity that encompasses the state’s healthcare services and benefits. However, in accordance with the principle of state decentralization, healthcare services are the responsibility of each autonomous region. In this sense, Catalonia has the Catalan Health Service (CatSalut), created in 1991, as a public body and the purchasing agent of health services in the region, organized based on several principles, among which we would highlight the value of universal care.

Thus, CatSalut is organized through health regions that are delimited based on geographical, socioeconomic or demographic criteria, which in turn are formed by a set of territorial units where access is provided to the population through primary care centres. Within this organizational landscape of healthcare resources, and as far as today’s topic is concerned, at national level, in 2013 the first professional guideline for endometriosis in Spain was published, the Guide for the Care of Women with Endometriosis in the National Health System. In this guideline, clinical protocols are established and some improvements to be made within the NHS are proposed. It also seeks to correct possible biases in health care and research from a gender perspective (Aranguez-Sánchez, 2018).

In Catalonia, meanwhile, in 2018 the Model of Care for Endometriosis in Catalonia was published, developed by the Departament de Health of the Catalan government, with the aim of making this disease more visible to allow a faster diagnosis, avoiding more complex situations, and addressing it in a comprehensive manner, whilst considering the different levels of care within the health care network of Catalonia. However, associations such as Endo&Cat (the association of endometriosis patients in Catalonia), express concern that guidelines are not always followed in practice or that the professionals, despite having the will and the effort, often do not have the necessary resources to provide diagnosis.

Despite the establishment of these guidelines, another problem encountered by women with the disease is the lack of referral units in public hospitals in Spain. These referral units, as defined in the established guidelines, should have a multidisciplinary team specialized in the care of highly complex endometriosis, but only 3 of the 17 autonomous communities in Spain have these services. In the case of Catalonia, there are only two such units located in the city of Barcelona. This means that many women, in search of a diagnosis and/or a response to menstrual discomfort that may correspond to the disease, in addition to the waiting lists lengthened by the Covid-19, must make long journeys from neighbouring towns to the city of Barcelona, which involves an investment of time and money, bringing with it important repercussions in the experiences of individuals.

A lot of women, in effect, have gone through serious psychological, social and health problems and challenges with accessing appropriate care. Therefore, there is significant need for an anthropological exploration that can analyse, in depth, the Catalan social context to understand in more detail how endometriosis is a public health issue rather than simply an individual problem.

Helping to understand the experience of endometriosis in Catalonia

In this sense, my anthropological doctoral thesis being carried out at the AFIN research group of the Autonomous University of Barcelona, through a qualitative approach, aims to analyse the paths (or what I call “therapeutic itineraries”) that women with endometriosis, or with suspected diagnosis, conduct to get medical treatment. In this regard, it considers some strategies women use to shorten the time of diagnosis by going to specialists in the private sphere, as some of the ethnographic findings to date show:

“I had managed to go to the gynaecologist. I went twice because I went once and insisted to see if that way, I would get them to look at me and no…. Then my mother told me ‘Well, look, pay a private gynaecologist to see if someone will look at what is wrong with you’. This is the one who finds my endometriosis and explains to me that I can go through the public system, I can pay a private mutual insurance company, or I can pay for a private surgery. […]. In the end, I wait… but the pains are so intense, so I start to go through the private mutual insurance company, and I have the surgery through the private insurance company. I have to say that a surgery with quite a lot of medical negligence.” (Carla, 33)

Therefore, in my study I will explore these questions in the Catalonian context for the first time from an anthropological point of view. I consider that the importance of exploring women’s accounts in an in-depth way will help to create new understandings about how the infrastructure of care in Spain, and in Catalonia specifically, impacts on women’s search for medical treatment.

By Vanessa Mantilla Salazar

Vanessa Mantilla Salazar is the recipient of a four-year scholarship from the Spanish state, the “FPU”, that supports the training of future university faculty. Her doctoral research concerns the therapeutic itineraries of women with endometriosis (or with similar/related symptoms), with a particular focus on the different social, biomedical, and political discourses that allow for the construction of the diagnoses.  She holds a degree in Nursing (BA), as well as in Cultural and Social Anthropology (BA and MA).

Bibliography:

Aranghez- Sánchez, T. (2018). ¿Por qué la endometriosis concierne al feminismo?. Madrid: Dykinson.

Carmona, F. (2021). Endometriosis: La guía para entender qué es y cómo cuidarte. Barcelona: Grijalbo Ilustrados.

Endometriosis UK. (2020). Endometriosis facts and figures. Retrieve from: https://www.endometriosis-uk.org/endometriosis-facts-and-figure

Guidone, H. C. (2020). The Womb Wanders Not: Enhancing Endometriosis Education in a Culture of Menstrual Misinformation.  In C. Bobel et al. (Eds). The Palgrave Handbook of Critical Menstruation Studies (pp. 269-286). Singapore: Palgrave Macmillan.

Health Department. (2018). Model of care for endometriosis in Catalonia [Model d’atenció a l’endometriosi a Catalunya]. Barcelona: Departament General de Planificació de Salut.

Spanish Ministry of Health. (2013). Guide for the attention of women with endometriosis in the national health system [Guía de atención a las mujeres con endometriosis en el Sistema Nacional de Salud]. Madrid: Ministry of Health, Social Services and Equality Publications Center.

The ‘male pill’: the next revolution in family planning or a road to nowhere?

In the 1960s, the female contraceptive pill revolutionised family planning and empowered married women in the UK to take control of their own reproductive health (although it would take over ten years for this freedom to be extended to unmarried women). Today, women have a wide variety of contraceptive methods (NHS, 2021) at their disposal, yet the options available to men remain limited to condoms or vasectomies. However, increasing the variety of contraceptive methods available to men could allow both the responsibility for contraceptive use and its associated risks and side effects to be more equally shared between men and women in relationships.

Several novel contraceptive methods for men have been developed and trialled over recent years, including an ongoing global trial of a contraceptive gel involving the Universities of Edinburgh and Manchester (NHS, 2021), which have  shown promising results (Anwalt et. al, 2019). However, overall progress towards the approval of such products has been slow, partially due to lack of pharmaceutical industry funding (Roberts, 2019).

While much is understood about the biological mechanisms of male fertility and contraception, there is surprisingly little literature investigating societal attitudes towards this issue which attracts so much media interest. As part of my undergraduate dissertation at De Montfort University, I examined various factors affecting men’s willingness to consider novel contraceptive methods. Would a ‘male pill’ be the next revolution in family planning, akin to the introduction of the female contraceptive pill over half a century prior? Or were these researchers on a road to nowhere, developing products for a market which didn’t exist?

In order to explore this, we conducted an online survey in which adult men used Likert scales (where they rated likelihood/acceptability on a scale of 1-5) to describe their willingness to consider using various contraceptive methods and the acceptability of potential side effects. A random sample of men were recruited from Twitter and Facebook posts advertising the survey. Perhaps due to the nature of the recruitment method, or the nature of the topic being researched, the sample was younger (the median age of participants was 22) and more educated (a majority had studied at degree level) than the population at large. Despite this, the sample contained an almost even mixture of single men (23) and men in long-term relationships (24).

This research found a high degree of acceptance towards the idea of a male contraceptive pill, with the majority of men in the study saying they were likely to consider using such a method. This figure was significantly higher amongst younger men than their older counterparts. These findings supported past research conducted in this area (Heinemann et. al, 2005) and suggests that the development of a male contraceptive pill should be a continued area of focus for the pharmaceutical industry. This is because, as this research found, by contrast much fewer men were willing to consider methods which involved any kind of injection.

Whilst the method of using a contraceptive gel applied to the skin daily had been viewed positively by men involved in clinical trials, few men in this research were willing to consider such a method of contraception. One of the potential factors which was attributed to this reluctance was lack of awareness of this as a method compared to the contraceptive pill. Future research may therefore want to explore whether better awareness and understanding of the diversity of contraceptive methods may help increase the acceptability of these alternatives.

Our data showed that men’s stated tolerance for almost all potential side effects was low, particularly those which may negatively affect their health such as increased blood pressure or slightly increased risk of cancer. Interestingly, the side effect which the most men said was not acceptable, an increased cancer risk, has been observed in relation to female oral contraceptives currently in widespread use. Tolerance of various side effects was found to be significantly lower amongst those men in long term relationships than amongst single men. A few ideas were considered to explain this difference, one of which being that those in long-term relationships were more likely to be older and therefore be more concerned about side effects. However, this was not borne out as data showed no significant difference in attitudes towards most side effects based on age alone. Another possibility is that men in long-term relationships are less concerned about the potential of unplanned pregnancy, and so the incentive to tolerate side effects in order to prevent pregnancy is reduced compared to single men. Further research is needed into this question before any firm conclusions can be drawn.


As well as examining men’s attitudes towards various methods of contraception and their potential side effects, this research also sought to examine how men’s perception of their own ‘masculinity’ affected their perceptions and opinions on such contraceptive methods. To achieve this, we compared how willing men were to consider methods which increased or decreased testosterone levels versus those which affected progesterone levels, as there is an association between testosterone levels and attributes which are perceived to be masculine. As had been hypothesised, men were significantly less likely to consider using methods of contraception which decreased their body’s testosterone levels, which might indicate that men’s perception of masculinity was an important consideration when it came to making decisions about contraception.

In summary, this small study supported previous research which found a high degree of willingness amongst men to consider the use of a ‘male pill’, in particular amongst the younger generation of men (Heinemann et. al, 2005). On the other hand, barriers to the widespread use of novel contraceptive methods amongst men persist including a lack of awareness of novel methods, low acceptability of side effects and notions of what altering testosterone levels means for their masculinity.

Can these barriers be overcome by increased awareness of novel contraceptive methods? Or by more education into the role of sex hormones? A great deal of further research is required if the goal of increasing choice for men, and sharing responsibility for contraception more fairly, is to be achieved anytime soon.

By Oliver Mannix

References:

Anawalt, B.D., Roth, M.Y., Ceponis, J., Surampudi, V., Amory, J.K., Swerdloff, R.S., Liu, P.Y., Dart, C., Bremner, W.J., Sitruk-Ware, R., Kumar, N., Blithe, D.L., Page, S.T. and Wang, C. (2019) ‘Combined nestorone-testosterone gel suppresses serum gonadotropins to concentrations associated with effective hormonal contraception in men’, Andrology, 7(6), pp. 878-887. doi: 10.1111/andr.12603.

Heinemann, K., Saad, F., Wiesemes, M., White, S. and Heinemann, L. (2005) ‘Attitudes toward male fertility control: results of a multinational survey on four continents’, Human Reproduction, 20(2), pp. 549-556. doi: 10.1093/humrep/deh574.

NHS (2021) Your contraception guide. Available at: https://www.nhs.uk/conditions/contraception/
(Accessed: 18th January 2022).

NHS (2021) Couples wanted to be part of pioneering male contraceptive research study – ‘NES/T’. Available at: https://mft.nhs.uk/2021/09/07/couples-wanted-to-be-part-of-pioneering-male-contraceptive-research-study-nes-t/ (Accessed: 18th January 2022).

Roberts, M. (2019) ‘Male pill- why are we still waiting?’, BBC News, 26th March. Available at: https://www.bbc.co.uk/news/health-47691567 (Accessed: 18th January 2022).

New DMU research shows how racial and social inequalities are resulting in stark adverse pregnancy outcomes for Black and South Asian women

Dr Tina Harris of the CRR is one of the senior authors on a new paper published in The Lancet reporting on recent findings of the research she and others are undertaking as part of the National Maternity and Perinatal Audit Project Team. Dr Harris who is an Associate Professor of Research at DMU and the senior clinical lead for Midwifery on this project has been sharing the findings of the team’s research which has looked at topics including waterbirth, body mass index, Covid-19 and its effect on maternal and perinatal outcomes. However, their most recent paper demonstrates the extent to which known risk factors relating to socioeconomic deprivation and being from a minority ethnic background have on adverse pregnancy outcomes, and these findings have been stark, shocking and in many cases saddening.

Photo by SHVETS production on Pexels.com

The NHS has set a target of halving rates of stillbirth and neonatal death and reducing levels of  preterm birth by 25% by 2025. Socioeconomic deprivation and minority ethnic background are known risk factors for adverse pregnancy outcomes. However, little has been known about the strength of these risk factors or the scale of their impact at the population level. Moreover, efforts to improve pregnancy outcomes and to lessen inequalities have been hampered by a lack of information about how differences in pregnancy outcomes are related to women’s societal circumstances and pre-existing health, and which groups are most strongly affected. To attempt to fill these gaps in knowledge, the team analysed records of births between 1st April 2015 and 31st March 2017 in NHS hospitals in England in an attempt to quantify socioeconomic and ethnic inequalities on stillbirth (the death of a fetus after 24 weeks of pregnancy), preterm birth (livebirth before 37 weeks), and fetal growth restriction (FGR) in England. In total, 1,155,981 women with a singleton birth were included in the study, of whom 77% were white, 12% South Asian, 5% Black, 2% mixed race/ethnicity, and 4% other race/ethnicity. Overall, 4,505 women had a stillbirth (0·4%). Of the 1,151,476 liveborn babies, 69,175 (6%) were preterm births and 22,679 (2%) births with FGR.

This research found that socioeconomic inequalities account for a quarter of stillbirths, a fifth of preterm births, and a third of births with fetal growth restriction—a condition in which babies at birth are smaller than expected for their gestational age. In particular, the research found that South Asian and Black women living in the most deprived areas experience the largest inequalities in pregnancy outcomes. Their estimates suggest that half of stillbirths and three quarters of births with fetal growth restriction in South Asian women living in the most deprived 20% of neighborhoods are potentially avoidable if they had the same risks as white women living in the most affluent 20% of neighborhoods. Similarly, about two thirds of stillbirths and about half of births with fetal growth restriction in Black women from the most deprived neighborhoods are potentially avoidable if they had the same risks as white women from the most affluent neighborhoods.

The findings of Dr Harris and the team has clearly indicated how pregnancy complications were found to disproportionately affect Black and minority ethnic women—with 12% of stillbirths, 1% of preterm births and 17% of births with FGR attributed to ethnic inequality. Importantly, this research found that even adjusting for socioeconomic deprivation, maternal smoking and BMI had little impact on these outcomes—indicating that other factors, including those related to discrimination based on ethnicity and culture may contribute to poor pregnancy outcomes.

Photo by TUBARONES PHOTOGRAPHY on Pexels.com

Co-lead author Professor Jan van der Meulen from the London School of Hygiene & Tropical Medicine, UK  explained: “There are many possible reasons for these disparities. Women from deprived neighbourhoods and Black and minority ethnic groups may be at a disadvantage because of their environment, for example, because of pollution, poor housing, social isolation, poor access to maternity and health care, insecure employment and poor working conditions, and more stressful life events. National targets to make pregnancy safer will only be realistically achieved if there is a concerted effort not only by midwives and obstetricians but also by public health professionals and politicians to tackle the broader socioeconomic and ethnic inequalities.”

From the findings of the research, Dr Harris and the team propose three measures to reduce inequalities in pregnancy outcomes, including targeting high-risk groups with clinical interventions during pregnancy, developing programmes to help stop smoking and promote healthy diets, as well as improving access to high-quality antenatal care (for example, by monitoring of fetal growth more precisely and frequently and offering to induce labour when stillbirth risk is increased). They also recommend public health strategies to reduce inequalities in women’s health before pregnancy, focusing on smoking and dietary habits as well as wider aspects of maternal adversity, such as mental health issues, substance abuse, and stress related to social disadvantage. Lastly, they call for wider policies to address the key causes of inequality, such as income, education, and employment, that indirectly influence pregnancy outcomes.

You can read more about this research and the work of of the National Maternity and Perinatal Audit Project Team here.

An extension to egg freezing storage limits and why we shouldn’t fear a sudden rise in women pursuing motherhood much later on in life

During the Covid-19 pandemic we have all spent less time in the company of others than perhaps ever before and for single women approaching the end of their fertility, the pandemic has come at a costly time when they would otherwise have hoped to be meeting a life partner and starting a family. Indeed, fertility clinics have seen a sharp rise in the number of women enquiring about egg freezing since the pandemic began. Egg freezing is a fertility extension technology and form of assisted reproduction which sees a woman undergoes hormonal stimulation to produce more eggs than she would in her normal monthly cycle, these eggs are then surgically retrieved and frozen at minus 196 degrees and stored at her clinic for potential future use. As mine, and others research has shown, women undergo egg freezing when faced with an illness or medical treatment that may render them infertile or may choose to freeze their eggs for so-called ‘social’ reasons such as due to their lack of a partner with whom to have a child.

When egg freezing was first legalised and regulated in the UK in 2000 there were many unknowns about who would use the technology, why, and about how long the eggs would remain viable. However, it is now widely accepted that once frozen, eggs remain in ‘suspended animation’ and do not age or decay. Since 2013 the number of egg freezing cycles performed by UK clinics has more than doubled as increasing numbers of women seek the opportunity to enable genetic motherhood later in life when their natural fertility may otherwise have declined. Currently women who freeze eggs for medical reasons, such as prior to chemotherapy for cancer, are able to store their eggs for up to 55 years. However, women who undergo the procedure for ‘social’ reasons, such as the lack of a suitable partner, have historically only able to freeze their eggs for 10 years at which point their eggs must be used or destroyed. Myself and others been campaigning for parity in storage times across both medical and social reasons and this week, following a public consultation, the Government announced that the 10 year storage limit will be replaced with a right for couples and individuals to access storage extensions for up to 55 years regardless of the reason for freezing. However, concerns have already been raised that this move may see greater numbers of women delaying motherhood until later on in life or see the emergence of much older mothers as women pursue motherhood for the first time in their 50s or even 60s.

Currently, the typical user of social egg freezing undergoes the procedure when she is on average 37 years of age, she is most often single, and in professional employment earning an above average income. The women I spoke to in my research recounted how their decision to undergo the procedure was most often shaped by the fear that they were running out of time to find a partner and form a conventional family as well as concerns of rushing in to a relationship with the wrong partner to avoid unwanted childlessness in the future. These women wanted to take the time to find the right partner, cultivate a secure relationship and environment in which to have a child prior to trying to conceive. At the time of freezing their eggs, many of the women I spoke to had wanted to have a child for many years, they didn’t really want to be freezing their eggs and in many cases would have preferred to actively be trying to conceive. Many women had been in relationships they had thought would lead to motherhood and had imagined that they would have already had a child by their current stage in life. As a result, these women often described how they felt they had not deliberately chosen to delay motherhood but had not become a mother for reasons outside of their control.

As such for these women, and those in research undertaken in America, Australia and Turkey, egg freezing wasn’t about putting off motherhood for as long as possible but about maintaining the possibility of shared genetic parenthood with a chosen partner as soon as was practically viable. Therefore, concerns that the lifting of the 10-year storage time limit on frozen eggs could lead to more women delaying childbearing is in my opinion unlikely. Egg freezing is expensive, invasive, painful and not without risk and not taken on lightly by its users.  As a result, it is unlikely that large numbers of younger women in particular will pursue the procedure following a change in storage limits particularly as younger women are less likely to be able to bear the cost of the procedure but also because they have more time to find a partner and pursue motherhood naturally.

Instead, the rise in the storage time limit is most likely to help women who froze, or will freeze, their eggs in their mid to late 30s and who just need an extra few years to become ready to use their eggs to conceive. Indeed, my research and that of others indicate that women who freeze their eggs do not want to be pursuing motherhood for the first time in to their 50s and 60s but want the option to use their eggs in their early to mid-40s with a partner of their choosing. As such concerns that the extension in the time limit will lead to women using the technology to have children in their fifth and six decade of life is unfounded, particularly given the fact that UK clinics do not routinely treat women beyond the age of 50.

By Dr Kylie Baldwin

You can learn more about Dr Baldwin’s research on social egg freezing via her monograph on this topic which is free to download here.