Key issues affecting intersex persons in healthcare include IGM or ‘sex-normalising’ non-vital medical interventions and the lack of free, prior and fully informed consent prior to performing such interventions, as well as access to healthcare and treatment by healthcare professionals. These issues relate to their right to bodily integrity (Article 3 of the Charter), to prohibition of torture and inhuman or degrading treatment or punishment (Article 4) and human dignity (Article 1) and to equal access to quality healthcare (Article 35).
Furthermore, several intersex respondents say they experienced ‘conversion’ practices to change their sexual orientation or gender identity or expression, via medical or other type of interventions, such as physical or sexual violence, social pressure, psychological abuse or humiliation, often violating their basic fundamental rights and dignity.
This chapter presents the EU LGBTIQ survey III results about whether they (or their parents) had provided free, prior and fully informed consent to have their sex characteristics modified, as well as the survey findings regarding ‘conversion’ practices experienced in life by intersex respondents. Finally, it presents the problems faced when accessing healthcare and results regarding mental health issues, including those related to suicidal thoughts and suicidal attempts by intersex respondents.
One of the most damaging life events affecting intersex persons is the practice of IGM, also referred to as ‘sex-normalising’ surgeries. These non-essential medical interventions are frequently carried out in infancy or childhood without the free, prior and fully informed consent of themselves or their parents. Such non-vital procedures, without prior provision of all the necessary information about their impact and potentially severe long-lasting physical and psychological effects, may violate fundamental human rights, including the right to bodily integrity, personal autonomy and human dignity. The persons consenting freely to such intervention need to do so after they receive comprehensive, comprehensible and evidence-based information about the proposed intervention, including the medical rationale, related risks, and the short- and long-term consequences of the intervention, of delaying the intervention, not performing the intervention or performing a different intervention.
Furthermore, the fear and trauma caused by hate-motivated violence and harassment can result in severe mental health impacts, including suicidal thoughts and suicide attempts. The results of this survey regarding violence and mental health problems indicate the need for further research about the impact of the former to the well-being of intersex persons.
Both the 2016 ‘Global disorders of sex development update since 2006: Perceptions, approach and care’ publication and the 2018 European publication ‘Caring for individuals with a difference of sex development (DSD): A consensus statement’ emphasise the need for clinicians to consider the ethical implications of conducting ‘sex-normalising’ surgical interventions, and discuss the postponing of genital surgery until an individual is old enough to understand the intervention and participate in making a decision.
The first EU LGBTIQ equality strategy 2020-2025 emphasises the need for Member States to adopt legislation that protects the bodily integrity of intersex persons and prohibits non-consensual, non-vital medical interventions. According to the Commission, IGM is a human rights violation and a form of violence against intersex individuals. As the Parliament stresses in its 2019 resolution on the rights of intersex persons, such ‘surgeries and medical treatments are performed on intersex children without their prior, personal, full and informed consent; whereas IGM can have lifelong consequences, such as psychological trauma and physical impairments’.
The fundamental rights and freedoms of intersex persons in the EU are enshrined in the Charter, which provides a robust legal framework that ensures the protection and promotion of these rights. Article 1, which guarantees human dignity, is directly violated by non-consensual and non-vital ‘sex-normalising’ medical interventions (see European Court of Human Rights, NB v Slovakia, Application No. 29518/10, Articles 74–81, 12 June 2012, which finds violation of human dignity in the case of non-consensual medical intervention, in this case sterilisation), often carried out in infancy or early childhood.
Article 2 of the Charter, which guarantees the right to life, is implicated in several serious life events faced by intersex persons and examined in this report. Non-vital medical interventions on intersex infants and children can have long-term physical and psychological consequences, raising serious concerns about whether the right to life is being respected in its broader sense. Furthermore, the fear and trauma caused by hate-motivated violence and harassment can result in severe mental health impacts, including suicidal thoughts and suicide attempts. In these circumstances, Article 2 engages an obligation on the part of duty bearers to provide adequate protection, support and prevention mechanisms.
Non vital ‘sex-normalising’ medical interventions might also infringe Article 3, which safeguards the right to the integrity of the person, particularly when performed without free, prior and fully informed consent. Such practices can amount to inhuman or degrading treatment, in breach of Article 4, which relates to the prohibition of torture and inhuman or degrading treatment or punishment. The persistent lack of autonomy, coupled with social stigma, as well as lack of protection and inappropriate treatment by authorities and medical services, also potentially impacts Article 7, which protects private and family life.
Furthermore, regarding practices such as IGM, ‘sex-normalising’ interventions and ‘conversion’ practices, the ECHR provides the right to not be subjected to torture or inhuman or degrading treatment (Article 3) while, concerning intersex children, Article 3 of the UN Convention of the Rights of the Child refers to the need to hold as a primary consideration the best interests of the child in all actions, including any health interventions.
Any law or policy intervention to deal with these and other challenges faced by intersex persons need to be guided by a human rights-based approach that builds on the foundations of a solid universal human rights architecture and the basic provisions of the Charter and European and UN Conventions.
In the first case regarding IGM (M v France, 2022), the European Court of Human Rights stressed that ‘A medical procedure carried out in the absence of any therapeutic necessity and without the informed consent of the person concerned was liable to constitute ill-treatment .... The sterilisation of a person performed without any therapeutic purpose and without his or her informed consent was incompatible in principle with respect for freedom and human dignity and amounted to treatment contrary to Article 3. The same was true of genital mutilation.’ However, the case was dismissed as inadmissible for failing to exhaust domestic remedies. Yet it is a landmark decision, regarding the possible characterisation of non-vital medical interventions performed on intersex persons without prior free and fully informed consent as genital mutilation and a form of torture.
Article 7 of the International Covenant on Civil and Political Rights provides that ‘No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his free consent to medical or scientific experimentation.’ In recent years, the UN Committee against Torture monitoring the implementation of the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment has focused on intersex persons as victims of harmful practices and non-vital ‘sex-normalising’ medical interventions without full, free and informed consent, urging the States to adopt legislative and other measures to ensure respect for the physical integrity and autonomy of intersex persons and to prohibit the performance of ‘non-urgent irreversible medical interventions’ before an intersex minor is sufficiently mature to participate in decision-making and able to give full, free and informed consent.
Furthermore, the Oviedo Convention on Human Rights and Biomedicine (Articles 5 et seq.) stresses that an intervention in the health field may only be carried out after the person concerned has given prior, free and informed consent or, under strict conditions, with the authorisation of his or her representative or an authority or a person or body provided for by law. Finally, the right of everyone to the enjoyment of the highest attainable standard of physical and mental health is enshrined in Article 12 of the International Covenant on Economic, Social and Cultural Rights.
The EU LGBTIQ survey III asks intersex respondents about any medical or health interventions they have had to modify their sex characteristics, and whether they were provided with detailed information and/or whether they provided their informed consent before these interventions took place. Over half (57 %) of intersex respondents say that they were not asked or did not provide fully informed consent (themselves or their parents) prior to the first surgery or hormonal treatment to modify their sex characteristics, as they might not have been provided all the necessary information and explanations required to provide an informed decision.
Figure 15 shows how less than half of intersex respondents (or their parents) have been provided detailed information prior to the first medical treatment to modify their sex characteristics (44 %), while the majority (55 %) were not provided such information. A similar percentage of lack of informed consent (57 %) was found for surgery or hormonal treatments. In both cases, intersex respondents say that they were not provided all necessary information when they or their parents were asked for their consent. In particular, the survey asked whether the intersex respondents or their parents were provided with detailed explanations about what the medical treatment involves and possible positive or negative consequences.
Figure 15 – Provision of detailed information prior to first medical treatment to modify sex characteristics
Bar chart showing how many intersex respondents (or their parents) have been provided of detailed information prior to first medical treatment to modify their sex characteristics (44%), while 55% were not provided such information.
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
NB: ‡ Results with this sign are based on a small number of responses and therefore are statistically less reliable.
Figure 16 shows that most intersex respondents discover the variation of their sex characteristics in adolescence and adulthood. The survey asked about when the variation was determined by medical professionals.
One third (34 %) of the intersex respondents say this happened in adolescence, 39 % at a later age and 14 % in childhood. This is the third report in which FRA reiterates that Member States should end non-vital surgery and medical interventions in intersex infants and adolescents designed to make them fit typical definitions of male or female without their or their parents’ informed consent.
Figure 16 – When variation of sex characteristics was determined by medical professionals
Bar chart showing the age group in which intersex respondents had their first medical treatment or intervention to modify their sex characteristics 25% between 18-24 years old, 16% 15-17 years old, 13% 10-14 years, 5 years old or less 11%, and 10% at birth or under one year old.
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
Figure 17 shows the age group in which intersex respondents had their first medical treatment or intervention to modify their sex characteristics. One in four (25 %) say this happened between 18–24 years old, 16 % 15–17 years old, 13 % 10–14 years old, five years old or less 11 %, and 10 % at birth or under one year old.
Figure 17 – Age of first medical treatment or intervention to modify sex characteristics
Bar chart showing the age group in which intersex respondents had their first medical treatment or intervention to modify their sex characteristics 25% between 18-24 years old, 16% 15-17 years old, 13% 10-14 years, 5 years old or less 11%, and 10% at birth or under one year old.
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
While ‘sex-normalising’ medical interventions or IGM are harmful practices aiming to modify the sex characteristics and their variations on the bodies of intersex persons, so-called ‘conversion therapies’ are harmful practices that aim to modify one’s sexual orientation or gender identity in many different ways, one of which is also medical treatment. The following section focuses on the latter.
In its EU LGBTIQ equality strategy 2020–2025, the Commission committed to foster Member States’ exchange of good practice on ending practices such as ‘conversion therapies’. ‘Conversion’ practices (or ‘therapies’) are defined as any treatment aimed at changing a person’s sexual orientation, gender identity or expression. They are usually aimed at changing, repressing or suppressing the sexual orientation, gender identity or expression of LGBTIQ persons in order to comply with societal, community and/or legal norms, for example conforming to a binary female/male gender model that excludes trans and non-binary or gender-diverse identities. These vary between less and more degrading, humiliating, invasive, abusive and/or violent interventions, such as physical or sexual violence, social or family pressure, psychological abuse or humiliation. ‘Conversion’ practices concern intersex survey respondents in their intersecting SOGIESC identities, as they are subject to them in order to change their sexual orientation or gender identity.
In principle 32, the Yogyakarta Principles recognise that everyone has the right to bodily and mental integrity, autonomy and self-determination, irrespective of sexual orientation, gender identity, gender expression or sex characteristics. Everyone has the right to be free from torture and cruel, inhuman and degrading treatment or punishment on the basis of sexual orientation, gender identity, gender expression and sex characteristics. No one shall be subjected to invasive or irreversible medical procedures that modify sex characteristics without their free, prior and fully informed consent, unless necessary to avoid serious, urgent and irreparable harm to the concerned person.
In the light of such international standards and recognition, ‘conversion’ practices can also breach Article 4 of the Charter prohibiting torture and inhuman or degrading treatment or punishment.
The EU LGBTIQ Survey asks respondents about their experiences of ‘conversion’ practices, varying from intervention by family members, prayer, religious ritual or religious counselling, to psychological or psychiatric treatment, medication, physical or sexual violence, verbal abuse or humiliation.
Intersex survey respondents say they experienced conversion practices at very high rates – four in ten or 39 % – compared with other respondents’ groups (EU-27 average: 25 %). Among intersex respondents, two in three (66 %) intersex trans men had such harmful violent or abusive experiences. Intersex trans women follow with 55 % and non-binary and gender-diverse intersex respondents with 45 %.
Figure 18 shows the proportion of intersex respondents who experienced ‘conversion practices’ in the 30 survey countries. The highest was recorded in Sweden (59 %), the lowest in Belgium (29 %).
Figure 18 – Intersex respondents who experienced ‘conversion practices’
A map of Europe with different coloured countries/regions showing the proportion of intersex respondents who experienced 'conversion practices'. The EU average being 39%, the highest was in Sweden (59%), the lowest in Belgium (29%).
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
NB: ‡ Results with this sign are based on a small number of responses and therefore are statistically less reliable.
Figure 19 shows that the most frequent type of ‘conversion practice’ suffered by intersex respondents was verbal abuse or humiliation (26 %), at a much higher rate than the EU-27 average of all respondents (14 %).
8 % of intersex respondents say they experienced physical violence, more than double of the 3 % for all respondents, and 4 % sexual violence aiming at ‘conversion’ of sexual orientation and/or gender identity, a much higher rate compared with the 1 % the survey found for all respondents.
Figure 19 – Types of ‘conversion practices’ experienced by intersex respondents
A bar chart showing the frequency of the types of 'conversion practices' experienced by intersex respondents. Verbal abuse or humiliation is the most frequent (26%) followed by intervention by family members (16%) while 8% experienced physical violence and 4% sexual violence aiming at 'conversion' of sexual orientation and/or gender identity.
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
NB: ‡ Results with this sign are based on a small number of responses and therefore are statistically less reliable.
Intersex persons often struggle to access adequate, respectful and quality healthcare, underscoring the relevance of Article 35 of the Charter on the right to healthcare – in conjunction with Article 21 and prohibiting discrimination, when facing the multiple barriers they face as revealed by the survey results.
For intersex persons, healthcare services are a critical life area where they face discrimination, harassment and privacy violations. Difficulties in accessing preventive and curative healthcare may jeopardise their right to health, their access to quality healthcare, the protection of their bodily integrity and ultimately their right to life. The survey data indicate that in extreme cases, access to emergency healthcare and the exclusion or avoidance of needed healthcare services is a concerning reality for some intersex survey respondents. One in five (20 %) of those who faced problems when accessing healthcare services encountered difficulties when using or trying to access emergency care.
Figure 20 shows the types of difficulties intersex respondents face in accessing healthcare services. Almost half (47 %) of intersex respondents faced problems when using or trying to access healthcare services as an LGBTIQ person. The most frequent problem they faced was inappropriate curiosity or comments (24 %), while 16 % had to change general practitioners due to their negative reactions or their needs were ignored (16 %). Notably, 8 % were refused treatment or have foregone treatment because they were afraid of discriminatory or intolerant reactions, while 14 % have avoided healthcare services altogether.
Figure 20 – Intersex respondents facing difficulties in accessing healthcare services
Bar chart showing the types of difficulties intersex respondents face in accessing healthcare services. Most frequent is inappropriate curiosity or comments (24%).
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
Figure 21 shows that trans women intersex respondents say that the most frequent difficulties in accessing healthcare were the inappropriate curiosity or comments (34 %) and the difficulty in gaining access to healthcare (30 %). More than one in four (26 %) had to change general practitioners or specialists due to their negative reactions, while one in five (20 %) were pressured to undergo a medical or psychological test, 14 % were refused treatment and 17 % have foregone treatment or avoided healthcare services.
Figure 21 – Intersex trans women facing difficulties in accessing healthcare services
Bar chart showing the types of difficulties intersex trans women face in accessing healthcare services. Most frequent for them is inappropriate curiosity or comments (34%) and difficulty in gaining access to healthcare (30%).
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
As Figure 22 shows, the trans men intersex respondents say that the most frequent difficulties in accessing healthcare is that they often have to change general practitioners or specialists due to their negative reactions (38 %), inappropriate curiosity or comments (33 %) or special needs ignored (20 %), while 7 % say they were refused treatment, 11 % have foregone treatment and 17 % avoided healthcare services altogether.
Figure 22 – Intersex trans men facing difficulties in accessing healthcare services
Bar chart showing the types of difficulties intersex trans men face in accessing healthcare services. Most frequent for them is having to change general practitioners or other specialists due to their negative reaction (38%) and inappropriate curiosity and comments (33%).
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
As Figure 23 shows, non-binary and gender-diverse intersex respondents say that the most frequent difficulty in accessing healthcare is that they avoided healthcare services (22 %) or had to endure inappropriate curiosity or comments (22 %), while often having to change general practitioners or specialists due to their negative reactions (18 %) or having special needs ignored (20 %). 13 % say they were refused treatment, 15 % have foregone treatment and 16 % say that it was hard to gain access to healthcare.
Figure 23 – Intersex non-binary and gender-diverse respondents facing difficulties in accessing healthcare services
Bar chart showing the types of difficulties intersex non-binary and gender-diverse face in accessing healthcare services. Most frequent for them is inappropriate curiosity and comments (22%) and avoiding healthcare services (22%).
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
Intersex respondents with disabilities or belonging to a minority report even more frequent problems or difficulties in accessing healthcare. Inappropriate curiosity or comments are reported by 39 % of respondents belonging to a minority other than LGBTIQ, while 27 % had to change general practitioners or other specialists due to their negative reactions.
Among those with severe disabilities, 37 % face inappropriate comments or curiosity, while 36 % say that their specific needs were ignored or not taken into account, and 33 % had to change general practitioners or other specialists due to their negative reactions.
Figure 24 shows the areas of healthcare in which intersex respondents faced difficulties accessing healthcare services. The most-cited types are sexual healthcare (43 %) and mental healthcare (39 %) or other medical care – general medicine (48 %).
Figure 24 – Areas of healthcare intersex respondents encountered difficulties to access
Bar chart showing the areas of healthcare in which intersex respondents faced difficulties accessing healthcare services. Most frequent area is sexual healthcare (43%) and mental healthcare (39%) or other medical care - general medicine (48%)
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
One of the most alarming results of the survey is the high frequency of suicidal thoughts among LGBTIQ respondents, often affecting intersex respondents much more than other respondents.
Figure 25 shows that about one in five intersex respondents (18 %) thought of committing suicide often during the last year, compared with 10 % of all respondents. The highest statistically reliable percentage was recorded in Poland (25 %) and the lowest in Greece (9 %).
Young people are more afflicted by mental health challenges and suicidal thoughts: about four in ten intersex respondents (39 %) between 15 and 17 years old thought of committing suicide in the past year (compared with the already too-high 24 % of all respondents), while one in four of those between 18 and 24 years did so (25 %), compared with 15 % of other survey respondents.
Figure 25 – Thinking of committing suicide often during the past year
A map of Europe with different coloured countries/regions showing the proportion of intersex respondents who thought of committing suicide often during the last year. The EU average being 18%, the highest was in Poland, Slovakia and Finland (25%) and the lowest in Greece (9%).
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
NB: ‡ Results with this sign are based on a small number of responses and therefore are statistically less reliable.
Close to one third (28 %) of non-binary and gender-diverse intersex respondents thought of suicide often or always within the past year, while one in five trans women intersex respondents (20 %) and about one in seven (15 %) trans men intersex respondents did so. However, Figures 26a, 26b and 26c show that overall, 65 % of trans women intersex, 61 % of trans men intersex and 51 % of non-binary and gender-diverse intersex respondents thought of suicide often, always or rarely, during the year before the survey.
Figure 26a – Thinking of committing suicide often during the past year – intersex gender identity subgroups
Intersex trans women
A bar chart showing the proportion of intersex trans women respondents who thought of committing suicide often, always, rarely or never during the last year. They thought it rarely 45%, never 35%, often 13% and always 7%.
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
Figure 26b – Thinking of committing suicide often during the past year – intersex gender identity subgroups
Intersex trans men
A bar chart showing the proportion of intersex trans men respondents who thought of committing suicide often, always, rarely or never during the last year. They thought it rarely 46%, never 39%, often 11% and always 4%.
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
Figure 26c – Thinking of committing suicide often during the past year – intersex gender identity subgroups
Intersex non-binary and gender-diverse
A bar chart showing the proportion of intersex non-binary and gender-diverse respondents who thought of committing suicide often, always, rarely or never during the last year. They thought it rarely 23%, never 49%, often 24% and always 4%.
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.
The survey asked respondents about whether they attempted suicide in the past. Close to one third (31 %) of all intersex respondents say they had: more than half of trans men intersex respondents (52 %) say they have attempted suicide, as shown in Figure 27. This was also the case for one third of non-binary and gender-diverse (33 %) and 29 % of trans women intersex respondents.
Figure 27 – Attempted suicide – intersex trans men
A bar chart showing the proportion of intersex trans men respondents who attempted suicide in their life. More than half (52%) said they did.
Source: EU LGBTIQ Survey III (2023), European Union Agency for Fundamental Rights.