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This project evaluates the use of legislation in Malta, Portugal, Spain and Germany to improve the healthcare experiences of intersex people. It is funded by the ESRC (UKRI2859) and is due to be completed in December 2029. There is a research team of five academics, each with legal expertise in the jurisdictions under review:
- Principle investigator: Dr Fae Garland, University of Manchester, UK: fae.garland@manchester.ac.uk
- Professor Mitchell Travis, University of Leeds, UK: m.travis@leeds.ac.uk
- Professor Angelika von Wahl, Lafayette College, US: vonwahla@lafayette.edu
- Dr Mireia Garces de Marcilla, University of Liverpool, UK: m.garces@liverpool.ac.uk
- Inês Espinhaço Gomes, Universidade Católica Portuguesa, Portugal: iegomes@ucp.pt
For more information about the researchers, please scroll down! On this page you will find information on the following:
- Background
- Accountability and Project Partnerships
- Advisory Board
- Phase 1: Years 1 and 2
- Phase 2: Comparative Analysis
- About the Researchers
Background
Intersex is an umbrella term that encompasses a wide range of innate variations in sex characteristics (IVSC) that at the gonadal, hormonal or chromosomal level gives the individual a combination of masculine and feminine characteristics. It is also referred to as DSD or 'Disorders of Sex Characteristics' particularly within healthcare or medical spaces. More recently, there has been a shift towards the use of the term variations of sex characteristics - or VSC. Variations can include:
- Congenital Adrenal Hyperplasia
- Complete or Partial Androgen Insensitivity Syndrome (AIS/PAIS)
- Hypospadias
- Turner's Syndrome
- Kleinefelter's Syndrome
Since 2015, six European States have introduced legislation designed to prohibit or delay such interventions until intersex individuals can participate in decision-making. These reforms have received wide international praise from activists, academics and international bodies like the Council of Europe and the UN (Garland and Travis 2023) and many states - including the UK - are under increasing pressure to introduce such legislative reforms.
However, little is known about the impact of this legal strategy on lived experience and whether using legislation is the right mechanism through which to deliver changes in healthcare practice. First, some commentators are concerned that Law - or legislation - is not precise enough to stop certain medical interventions from happening. Others are worried that such Laws may be too simplistic and ignore the level of detail required on this complex issue to ensure that individuals receive the best possible care within clinical settings. Furthermore, some fear that such a ‘heavy-handed’ form of State regulation will alienate medics and parents thus preventing meaningful discussions to improve healthcare standards in this area. Ultimately, little is known about what is happening in this area of healthcare post-legislative reform. Simple put, is legislation the way in which to instil change?
To provide a solid evidence-base for States considering reform in this area, this project examines the experiences of four European jurisdictions who each introduced legislative reform on intersex healthcare and are all at different phases of implementation: Malta (2015), Portugal (2018), Germany (2021) and Spain (2023).
Our main research question is: what lessons can the UK Government (and indeed other States) learn from the European experience of introducing legislation specifically designed to improve the lived healthcare experiences of intersex people? These findings will go well beyond the context of the UK. Our core objectives are to:
- Compare the four legal frameworks;
- Explore the implementation experiences of these laws;
- To determine how these laws have changed intersex lived experience
- Assess how far legislative prohibitions will improve intersex healthcare experiences;
- Identify core lessons for activists, public policy makers and healthcare practitioners; and
- Consider whether the UK and other states should introduce similar legislative reform or whether other mechanisms might be more effective.
The project is divided into two phases. Phase 1 focuses on case studies where we will explore in depth the experiences of each of the four jurisdictions. Phase 2 is comparative, and brings together the themes, commonalities and differences experienced by each jurisdiction to consider, more broadly, whether there are lessons to be learned from using legislation itself. We discuss these phases below.
Accountability and Project Partnerships
The team is dedicated to ethical and responsible research and conscious of how positionality influences research design, conduct and analysis. Accordingly, the project is underpinned by principles developed by the community such as Researching intersex populations - InterAction and How-to-be-a-great-intersex-ally-A-toolkit-for-NGOs-and-decision-makers-December-2015.pdf A central feature of the project is to centre the voices of those most affected by legal reform, particularly given that the team are all endosex. While part of this has motivated our methodological use of interviews, we will be working with domestic intersex organisations in each state (including the UK), European intersex organisations and the Council of Europe to make sure that the project’s design and delivery is driven by stakeholders. Not only will some groups/individuals with lived experience and expertise in human rights, legal reform, public policy and advocacy sit on our advisory board to have oversight of the direction of the project, but we have also built in space to enable co-analysis of data and the co-production of materials e.g. research briefing papers aimed at domestic policymakers and supra-national organisations. These papers are intended to set out best practice for designing and implementing law reform. Throughout the project, we remain dedicated to improving the way in which we hold ourselves accountable and collaborate with people with lived experience.
Advisory Board
To make sure the project is accountable, we have an advisory board that will meet with us at least twice a year to provide guidance and oversight on the project. The advisory board consists of:
Phase 1: Years 1 and 2
This part of the project explores each jurisdiction in depth by reviewing literature, public policy documents, consultation documents, media, data, law and documents relating to the legislative prohibition as well as healthcare protocols, regulations and guidelines.
- Dr Fae Garland and Prof Mitchell Travis will lead on Malta and the UK
- Inês Espinhaço Gomes will lead on Portugal
- Dr Mireia Garces de Marcilla will lead on Spain
- Prof Angelika von Wahl will lead on Germany
We will also conduct telephone interviews with healthcare practitioners, public policy experts, those with lived experiences and also parents and carers in each jurisdiction to gain insight into the way the law has affected the experience of these different stakeholders. These interviews will be completely anonymous and confidential.
Phase 2: Comparative Analysis
Drawing on the data collected in phase 1, we will compare how far medical practice in the four jurisdictions have been altered by legislation and the similarities/differences in experiences relating to:
- changing day-to-day healthcare practices;
- how guidelines have been adopted/updated to accommodate changing legal frameworks;
- and how responsibility for the health of intersex people is distributed, negotiated, and avoided between law, the state and medical professionals.
Analysis will also consider legal prohibitions’ utility in changing medical practice and whether other avenues might be necessary for change.
In doing so, we will identify key ways to establish whether legislative reform is 'successful' and the specific factors States need to account for if they wish to introduce effective legal reform.
About the Researchers
Principle Investigator: Dr Fae Garland is a Senior Lecturer in Law at the University of Manchester and Co-Directs the Manchester Centre for Public Law, Regulation and Governance. As PI, Fae is responsible for overseeing this ESRC-funded project. She has published widely on the area of intersex rights and law in journals such as Law and Society; Legal Studies; Feminist Legal Studies; and New Zealand Law Review. She has co-authored a book with Prof Travis: Intersex Embodiment, for Bristol University Press. She has also co-authored a number of national and international governmental reports that explore intersex rights and law and has been PI on a range of empirical projects which consider the impact of law reform on intersex lives. In 2019 she was awarded funding by the British Academy (with Prof Travis) to examine the operation of Maltese legislation which prohibits unnecessary surgeries on intersex infants.
Co-Investigator: Professor Mitchell Travis is a Professor of Law and Social Justice in the School of Law at the University of Leeds. Along with Dr Fae Garland, Mitchell has published widely in academic journals such as Legal Studies, The Journal of Law and Society, Medical Law International, Feminist Legal Studies and Human Rights Law Review. Alongside Dr Fae Garland he wrote the monograph Intersex Embodiment: Legal Frameworks Beyond Identity and Disorder (Bristol University Press). He has also co-edited A Jurisprudence of the Body (Palgrave), Cultural Legal Studies of Science Fiction (Routledge) and Science Fiction as Legal Imaginary (Routeldge). Mitchell has been a consultant for the Council of Europe and the Norwegian Directorate for Children, Youth and Family Affairs. He has previously been a trustee of the Socio-Legal Studies Association.
Co-Investigator: Dr Mireia Garcés de Marcilla is a Lecturer in Law at the University of Liverpool. Her research lies at the intersection of medicine, law and society; as she deploys methods borrowed from feminist and critical traditions to examine how legal and medical institutions regulate our bodies. Mireia's articles on genital cutting, sports and gender have appeared in Social and Legal Studies, The Lancet and the London Review of Books.
Co-Investigator: Inês Espinhaço Gomes is a Lecturer at the Porto Faculty of Law, Universidade Católica Portuguesa and a PhD candidate at the University of Kent. She has coordinated the two editions of the course Human Rights, Sex Characteristics, Gender Identity and Expression at the Legal and Judicial Training Unit of the Center for Social Studies at the University of Coimbra. Inês lectures and provides training on law and GIESC issues across several Portuguese universities and institutions. Her research focuses on human rights and issues relating to trans and intersex individuals, with her doctoral work examining the relevance of legal sex and gender in sports. Her latest article “‘I Am Strong, I Am Invincible, I Am Woman’: A Commentary on the Semenya v Switzerland Case” was published in the Australian Feminist Law Journal.
Co-Investigator: Angelika von Wahl is the John L. '67 and Jean A. Hatfield Professor of International Affairs at Lafayette College (USA). Her research interests focus on issues of gender equality and social policy in Germany, the European Union, and the USA. Currently she is working on a monograph analyzing activism on intersex issues at the intersection of social movements, medical authority, and the state, tentatively titled “From Object to Subject, Intersex Activism Transforming States and Medicine.” She has recently published several book chapters and articles on this topic, among them “Throwing the Boomerang: German Intersex Mobilization and Policy Change,” (2017). “From Object to Subject: Intersex Activism and the Rise and Fall of the Gender Binary in Germany,” Social Politics (online 2019, in print 2021), “Lessons on Opportunity Hoarding and Gender Binarism: Building an Alliance of Women’s Trans, and Intersex Movements,” European Journal of Politics and Gender (2021) and “From Private Wrongs to Public Rights: The Politics of Intersex Activism in the Merkel Era,” German Politics (2021). She is a member of the LGBTQ+ community.
Credits:
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