This session of the Progress Educational Trust (PET)'s 2022 Annual Conference was chaired by family law barrister Andrew Powell, who the previous year had been named Junior Barrister of the Year in the Family Law Awards. The speakers were Dr Amanda Adeleye, reproductive endocrinologist at the Centre for Reproductive Medicine and Fertility in Chicago, Vanessa Haye, founder of Femelanin, Deborah Gold, chief executive of the National AIDS Trust, and Natalie Gamble, founder of Brilliant Beginnings.
Dr Adeleye's presentation, entitled 'Disparities in Fertility Care and Outcomes for Black People', compared disparities in IVF between the UK and the USA. She explained that the Human Fertilisation and Embryology Authority (HFEA)'s 2021 report Ethnic diversity in fertility treatment 2018 helped inspire her presentation, as it explored the differences in access to and outcomes of fertility treatment among different ethnic groups, and revealed notable disparities for black patients. The report showed that black women were on average two years older when they first sought fertility treatment, experienced a lower birth rate per embryo transfer, and experienced a higher rate of multiple births.
From here, Dr Adeleye discussed why black patients had lower chances of successful treatment in both the USA and UK. She began by looking at potential biological reasons (such as likelihood of tubal issues and uterine fibroids) and anatomical differences, before moving onto structural issues. She argued that these structural issues are rooted in unconscious bias, especially unacknowledged systemic racism inherent in medicine. She discussed research published in the American Journal of Obstetrics and Gynaecology, exploring racial and ethnic disparities in obstetric care provision and the potential for improvement, highlighting the need for healthcare providers themselves to question the extent to which they perpetuate stereotypes and racial biases.
Dr Adeleye's presentation dovetailed nicely into the next presentation from Haye, entitled 'Anti-Social Egg Freezing', which discussed Haye's lived experience as an ectopic pregnancy survivor and IVF patient. She started with a quote from the 2022 Birthrights Report Systemic Racism, Not Broken Bodies, discussing the fear of prejudice experienced by many black and brown patients in healthcare experiences. She then shared her own experiences of being gaslit by healthcare providers, arguing for an intersectional approach to understand why there are disparities in health outcomes.
Haye recommended four key areas for healthcare improvement, to ensure greater accessibility and inclusiveness – lack of adequate research, cultural myths and media portrayals, stratified reproduction, and lack of awareness. Echoing Dr Adeleye, Haye mentioned the need for more research looking specifically at the impact of race on the experience of fertility, after research published in Psychology of Women Quarterly found that experiencing infertility greatly impaired women's sense of self and gender identity. Haye then moved onto cultural myths and portrayals, noting how images in Google search results for words such as 'infertility' depict predominantly white and heterosexual couples, and how the pervasive myth of the hyperfertile black woman results in patients being met with unconscious bias at healthcare appointments.
When discussing stratified reproduction, Haye approached the issue from an intersectional perspective, referring to research in Critical Public Health concerning black women's reproductive experiences in the UK. The most important point, Haye emphasised, was a lack of awareness and community – there are very few spaces for ethnic minority women to discuss their fertility experiences, which means black women are forced to deal with their experiences in isolation. Haye ended with a quote from Regina Townsend, founder of the Broken Brown Egg – 'Infertility is more than babies' – which conveys the impact of fertility struggles on self-esteem and sense of community.
Gold's presentation, 'Donor Conception and Equality for People with HIV', concerned the obstacles faced by those who are HIV-positive. Living with HIV has changed in recent years, thanks to groundbreaking scientific advantages – an HIV-positive person receiving effective treatment, who has an undetectable viral load, cannot pass the virus on. However, society's knowledge and understanding has not kept pace, with stereotypes from the 1980s and 1990s remaining prevalent. Despite undetectable viral loads, the law prevents those living with HIV from using their own gametes for fertility treatment if they are in a same-sex relationship (see BioNew 1155).
Access to fertility treatment is allowed only for a select few HIV-positive people falling within a narrow definition – heterosexual couples in an intimate partner relationship. If they do not fall within this definition then they are classed as donors, rather than partners, and it is unlawful for a person living with HIV to act as a gamete donor in any situation. This severely restricts the ability of those living with HIV to create families in a variety of ways, including surrogacy and reciprocal IVF (where one female partner uses her egg to create the embryo, and the other female partner is the gestational carrier). Gold shared some powerful quotes from those seeking to access fertility treatment and coming up against these laws, highlighting how patients feel disheartened and stigmatised. This has prompted the National AIDS Trust to call for changes, to allow HIV-positive people to access fertility treatment.
Gold explained that the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) has to change its advice to the HFEA and the Department of Health, before there can be any change to primary legislation. Unfortunately, no HIV expert sits on SaBTO, leading to misunderstanding and lack of engagement. The Equal HIV Fertility Rights Now has raised awareness of the issue, and the Labour Party has committed to fertility equality for all HIV-positive people if elected. There are signs that SaBTO might be open to reexamining its policy, but even if it does so, a change to primary legislation will be necessary.
The final speaker, Natalie Gamble, discussed the challenges faced by diverse families due to an outdated legal framework in her presentation 'Broken Rainbows: Diverse Modern Families and UK Law'. Going beyond same-sex families, Gamble discussed family diversity in trans parents, multi-parent families, and those using various forms of collaborative reproduction (surrogacy, co-parenting, gamete donation). With a growing number of people in such non-traditional family structures, there is an accompanying need for legal recognition and protection.
Though changes in the law have tried to fit new family forms into existing legislation (for example the HFE Acts of 1990 and 2008), the law has not accommodated these family structures, so much as it has forced them into the pre-existing mould of a family. Gamble described how the 2008 Act slotted female same-sex couples somewhat awkwardly into the existing framework for donor conception. Similarly, the laws surrounding surrogacy merely allowed for unmarried and same-sex couples to apply for parental orders in 2008, and for single people to apply for parental orders in 2019. Despite the limitations of the law, there has been a process of judicial creativity that has allowed more people to be recognised as parents.
Trans parents seeking fertility treatment still face legal barriers, due to the gendered regulatory framework outlined in the HFE Acts. In Re TT (see BioNews 1045), the main issue at hand was the applicant's legal status as a mother – despite being a trans man, and despite the fact that where a trans man is the partner of the person giving birth, they are able to be recognised legally as the father. Gamble argued that this state of affairs is illogical, and discriminates against trans parents.
She then turned to multi-parent families, describing how the law only allows for a maximum of two parents to be legally recognised. Where the 'wrong' person is recognised as a legal parent (as in the case of surrogacy for example), the law has mechanisms in place to allow for the correct individual's recognition, but again only for a maximum of two people. Gamble argued that this results in an unfair hierarchy for multi-parent families, where some parents will be excluded from legal recognition.
Gamble also discussed how the legal framework for surrogacy has not kept up with societal changes, and how the parental order process is unsatisfactory – essentially, it entails parenthood being dealt with after the fact. Gamble noted that this area of law is currently being review, with the Law Commissions' Final Report and Draft Bill expected in early 2023. She concluded her presentation by arguing that the law should accept the diversity of family structures and reflect choice, parents' identities, and – importantly – children's realities.
The session concluded with a lively discussion, with audience members picking up on how the regulatory frameworks have created an inaccessible environment for those not fitting within the narrow definitions of 'acceptable' fertility patients or 'acceptable' parents. By questioning who is privileged in kinship creation and why, the speaker panel began to unpack the stereotypes underpinning the legal and regulatory frameworks governing fertility and family formation. There was a consensus on the panel that the law should catch up with social reality and scientific advances, to adequately protect all existing families and all those seeking to start new families.
Leave a Reply
You must be logged in to post a comment.