Cultural Heritage and Religion Impact on Social Acceptance and Lives of the InterSex

Informations projet

CHRISALIS

N° de convention de subvention: 101067189

DOI

10.3030/101067189

Projet clôturé

Date de signature de la CE 14 Juillet 2022

Date de début 1 Septembre 2023

Date de fin 31 Août 2025

Financé au titre de

• Marie Skłodowska-Curie Actions (MSCA)

Coût total

Aucune donnée

Contribution de l’UE

€ 215 534,40

Coordonné par

DUBLIN CITY UNIVERSITY
Ireland

Periodic Reporting for period 1 - CHRISALIS (Cultural Heritage and Religion Impact on Social Acceptance and Lives of the InterSex)

Période du rapport: 2023-09-01 au 2025-08-31

Résumé du contexte et des objectifs généraux du projet

People with variations of sex characteristics (often referred to as intersex) are born with physical traits that do not fit typical definitions of male or female bodies. Across Europe, intersex people continue to face social stigma, ethical controversy, and inconsistent policy responses, particularly in healthcare. Decisions affecting intersex bodies are frequently made early in life and are shaped not only by medical considerations, but also by cultural norms, moral values, and social expectations about sex and gender.
Despite increasing international attention to intersex human rights, many public debates, policies, and clinical practices still rely on narrow biomedical or legal frameworks. These approaches often overlook the broader social, cultural, and ethical contexts in which decisions are made, as well as the lived experiences of intersex people and their families. This gap limits the effectiveness of policy reforms, professional guidelines, and awareness-raising initiatives.
CHRISALIS addressed this challenge by placing social sciences and humanities (SSH) at the centre of intersex research. The project investigated how cultural heritage, ethical reasoning, and social norms shape intersex lives, healthcare practices, and policy development. Focusing on Ireland and Italy - two understudied countries with different institutional and policy environments - the project used a comparative approach to examine how similar moral frameworks can lead to different social and political outcomes.
The overall objective of CHRISALIS was to generate socially grounded, ethically informed knowledge that supports more inclusive, rights-based, and culturally sensitive approaches to intersex issues. Specifically, the project aimed to:
(1) explore how intersex bodies and experiences are represented and understood in public, professional, and policy discourse;
(2) analyse ethical and moral reasoning in intersex healthcare and decision-making; and
(3) produce comparative knowledge that can inform policy dialogue, professional reflection, education, and public understanding.
By integrating perspectives from social psychology, sociology, ethics, policy studies, and intersex studies, CHRISALIS responds to European priorities on equality, human rights, and socially responsible research. Its results are expected to contribute at multiple levels: by informing ethical reflection in healthcare and policy, supporting education and training initiatives, strengthening intersex advocacy and awareness-raising, and fostering dialogue between researchers, professionals, policymakers, and civil society. In doing so, the project demonstrates the essential role of SSH research in addressing complex societal challenges that cannot be resolved through technical or biomedical solutions alone.

Travail effectué depuis le début du projet jusqu’à la fin de la période considérée dans le rapport et principaux résultats atteints jusqu’à présent

CHRISALIS was implemented as an interdisciplinary, qualitative, and comparative research project grounded in social sciences and humanities. The work combined document analysis, media analysis, participatory research, and qualitative empirical methods to investigate how cultural, ethical, and moral frameworks shape intersex/variations of sex characteristics (intersex/VSC) lives, healthcare practices, and policy development in Ireland and Italy.

Research Design and Methods
The project adopted a multi-method qualitative design, allowing triangulation across sources and perspectives. The research activities included:
1. Systematic analysis of documents and texts, including healthcare guidelines, policy documents, legal frameworks, professional recommendations, and grey literature relevant to intersex/VSC in both countries.
2. Comparative media analysis of print and online news coverage, examining how intersex/VSC bodies and experiences are framed in public discourse and how moral, cultural, and political assumptions shape representation.
3. Participatory stakeholder mapping, identifying intersex-led organisations, patient groups, healthcare actors, allied NGOs, and policy stakeholders to situate the research within existing advocacy and institutional landscapes.
4. Qualitative interviews with intersex activists, family members, healthcare-related experts, and policy actors, generating in-depth insights into ethical reasoning, decision-making processes, and institutional practices.
5. Focus groups and group-based discussions with healthcare professionals involved in intersex/VSC care, exploring professional cultures, organisational dynamics, and ethical dilemmas in clinical contexts.
Across all stages, the research was conducted in accordance with strict ethical standards, with particular attention to informed consent, confidentiality, and the protection of participants working in sensitive or contested settings.

Main Scientific and Technical Achievements
1. Empirically grounded analysis of cultural representations
The project produced a detailed comparative account of how intersex/VSC bodies are represented in media, professional discourse, and policy frameworks in Ireland and Italy. The findings demonstrate that intersex is frequently framed through medicalised, pathologising, or moralised narratives, often obscuring lived experiences and reinforcing narrow understandings of sex and normality. At the same time, the research identified emerging counter-narratives driven by intersex-led activism and rights-based approaches.
2. New insights into ethical and moral reasoning in healthcare
CHRISALIS generated original qualitative evidence on how ethical decisions in intersex/VSC healthcare are made in practice. Rather than being guided solely by formal ethical principles, decision-making was shown to be shaped by cultural norms, moral assumptions about gender and family, professional traditions, and institutional constraints. The project highlighted tensions between stated commitments to bodily autonomy and the realities of clinical uncertainty, risk management, and parental responsibility.
3. Comparative understanding of policy and governance contexts
By comparing Ireland and Italy, the project demonstrated how similar cultural and religious backgrounds can lead to different policy trajectories and healthcare arrangements. This comparative perspective revealed the importance of institutional histories, advocacy structures, and professional networks in shaping how intersex/VSC issues are addressed at national level.
4. Methodological contribution to sensitive SSH research
The project developed and applied dialogic qualitative approaches suited to research with marginalised communities and hard-to-reach professional groups. These methods emphasised reflexivity, trust-building, and ethical responsibility, offering a transferable model for future SSH research in contested healthcare and policy domains.

Overall Outcomes
Taken together, the work performed under CHRISALIS produced a coherent and socially grounded body of knowledge that advances intersex studies beyond biomedical or purely legal perspectives. The project delivered robust empirical evidence, comparative analysis, and methodological innovation that can inform future research, policy reflection, professional practice, and education related to intersex/VSC issues in Europe and beyond.

Progrès au-delà de l’état des connaissances et impact potentiel prévu (y compris l’impact socio-économique et les conséquences sociétales plus larges du projet jusqu’à présent)

CHRISALIS advances research on intersex/variations of sex characteristics (intersex/VSC) beyond the current state of the art by shifting the focus from abstract ethical debates or biomedical framings to empirically grounded, socially situated analysis of how decisions are actually made in healthcare, policy, and everyday life. The project’s results extend existing knowledge in intersex studies, social psychology, sociology, and health research in several key ways.

1. Advancing Knowledge Beyond Existing Approaches
Most existing research on intersex/VSC has concentrated on legal standards, clinical protocols, or normative human rights arguments. CHRISALIS goes beyond these approaches by demonstrating that ethical and policy outcomes are deeply shaped by cultural meanings, moral assumptions, professional norms, and institutional arrangements. By analysing how these factors operate in practice, the project reveals why policy reforms and ethical guidelines often fail to translate into meaningful change on the ground.
The comparative design further advances the field by showing that similar ethical dilemmas are negotiated differently across national contexts, even where cultural and religious traditions overlap. This highlights the limits of one-size-fits-all solutions and underscores the need for context-sensitive, socially informed approaches to intersex/VSC governance.

2. Methodological Innovation
The project contributes to methodological advancement in social sciences and humanities research on sensitive and contested topics. By adopting dialogic and reflexive qualitative methods, CHRISALIS demonstrates how rigorous empirical research can be conducted ethically with marginalised communities and hard-to-reach professional groups. This approach moves beyond extractive research models and offers a transferable framework for studying other complex healthcare and policy domains.

3. Potential Impacts
The results of CHRISALIS have high potential for impact across several domains:
- Scientific and academic impact: The project strengthens interdisciplinary intersex studies by integrating social psychology, sociology, ethics, and policy analysis, providing new empirical foundations for future research.
- Policy and regulatory impact: By identifying sociocultural and institutional barriers to reform, the findings can support more realistic, evidence-informed policy development and evaluation.
- Professional practice impact: Insights into ethical reasoning and organisational dynamics can inform training and reflection among healthcare professionals and allied practitioners.
- Societal impact: By challenging dominant representations and making intersex/VSC experiences more visible and intelligible, the project contributes to more informed and responsible public discourse.

Needs for Further Uptake and Success
To maximise the long-term impact of these results, several enabling conditions are important:
- Further research to extend comparative analysis to additional countries and healthcare systems.
- Integration into education and training, particularly in healthcare, psychology, and social science curricula.
- Sustained dialogue with policymakers, professionals, and intersex-led organisations to translate empirical insights into practice and governance.
- Supportive policy and regulatory environments that recognise the importance of social and cultural evidence alongside biomedical data.
Overall, CHRISALIS delivers results that go beyond the state of the art by reframing intersex/VSC issues as socially embedded ethical and policy challenges. This perspective opens new pathways for research, practice, and governance that are more responsive to lived experiences and real-world decision-making processes.

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