In the making: Put an end to IGM

Germany

On 12th May 2021 in Germany a law was adopted “on the protection of children with variants of sex development”. It sets a yet non-comprehensive framework to preserve intersex children from non-vital, non-emergency medical interventions, while some obstacles persist in the way towards full protection.

What the law says

The law envisions three possible situations, in relation to intersex children who are incapable of giving consent:

•  Interventions “carried out solely with the intention of bringing the child’s physical appearance into line with that of the male or female sex”
  → In this situation interventions are unlawful andparental consent is not possible as the law prohibits parents or legal guardians to “consent to treatment of a child who is incapable of giving consent and who has a ‘variants of sex development’* which, without any other reason for the treatment being added, is carried out solely with the intention of making the child’s physical appearance similar to that of the male or female sex”. (§ 1631e (1.1))

• Surgical interventions that “could result in an approximation of the child’s physical appearance to that of the male or female sex”, if they are “necessary to avert a danger to the child’s life or health and cannot be postponed until approval has been granted”
  → In this case parental consent is possible without any additional procedure, as the justification of the law details: “If there is a danger to life or health and an operation must be performed quickly, it must be assumed that the child would give priority to averting this danger if he or she had full capacity of understanding and judgement; such an operation is therefore permitted without authorisation under the narrow condition mentioned. […] Subsequent authorisation by the family court is not provided for in such cases. However, the possibility of a later review under criminal or civil law remains open.”

• Surgical interventions that “could result in an approximation of the child’s physical appearance to that of the male or female sex”, and in cases where “the procedure cannot be postponed until the child has made a self-determined decision of his or her own”
  → are lawful, provided that approval is granted by the family court, after having established that “the planned intervention is in the best interests of the child” (§ 1631e (1.3); however, exceptions to the family court procedure are granted to surgical interventions that are deemed urgently necessary in order to “avert danger to the child’s life or health and cannot be postponed until approval has been granted”.
  In order to prove that the planned procedure is in the best interest of the child the parents need to submit to the family court an opinion of an interdisciplinary commission, which consists of:
  • The attending medical doctor
  • Another medical doctor (from a different health care facility)
  • A psychologist, child psychotherapist or child psychiatrist
  • A person trained in ethics

Positive points

The law:

• Is a first step towards comprehensive protection of intersex children from non-vital, non-emergency medical interventions
• makes surgeries solely performed for aligning the intersex child’s body to a more normative appearance and without the fully informed consent of the child unlawful
• Establishes a family court approval procedure for interventions which aim to eliminate a perceived functional disorder
• does not follow the proposal tabled by one party to explicitly exclude children with a CAH diagnosis – these children are one of the biggest groups suffering from non-vital medical interventions
• extends the retention period for medical records until the age of 48
• provides for an interdisciplinary commission to issue an opinion on whether the child’s best interest is being considered
• Provides examples of the most common non-vital surgical interventions that family courts should consider as falling under §1631e (1.1) and hence as prohibited, thereby providing additional guidance to courts
• exemplifies that the  Federal Government is aware of and acknowledges some of the possible legal gaps of the current version of the law, and is committed to extend the protection in the future by providing for an evaluation of the law after 5 years. This evaluation will include an obligatory examination by the Federal Government about whether an extension of the provisions is appropriate in the following respects:
  • “extending the family court approval procedure to additional types of treatment or to additional groups of children,
  • introduction of a procedure for verifying the capacity of a child to give consent,
  • introduction of requirements for the treatment of children with have variants of sex developments and are capable of giving consent,
  • introduction of an obligation to seek independent advice on dealing with variants of sex development, and
  • inclusion of a provision on the costs of the opinion of the interdisciplinary commission.”

Main obstacles towards full protection

While these articles, at first glance, seem to ensure a protection of intersex infants and children from non-vital medical interventions, the details show a much more complex picture, which includes loopholes and a risk of possible circumvention of its essential aim. Central obstacles are:

# Lack of universality – pathologizing stance
The medical term “variations in sex development” used in the law only protects some intersex children, thereby excluding intersex children who, from a current medical perspective do not fall under this definition, from the necessary comprehensive protection. Once these definitions and diagnoses change the affected children will no longer be covered under the law and will be left without protection. The law itself establishes these limits. By doing so it yet again defers its political responsibility to protect all intersex children to the medical profession. It also perpetuates a pathologizing perspective.

# Risk of interventions in the lack of health needs
Interventions that may be approved include those deemed “necessary to cure or eliminate a functional disorder or to preserve the ability to reproduce, without there being any real risk to health at the present time, even if they have the effect of altering physical appearance” (Explanatory report of the law)
→ This means that (hetero)normative-compliant functions such as “penis-in-vagina” sexual intercourse and potential reproductive capacity may still be considered more important than the physical integrity and self-determination of the intersex person.
Reports of intersex adults have shown that some of these interventions have a high risk of creating psychological trauma as well as physical health issues if they are performed at an early age and without the intersex individuals personal and fully informed consent.

One of the other reasons that can justify an intervention may be found in the “consolidated wish” of the child, even if they are incapable of giving informed consent (Explanatory report of the law)
→ Considering the still high level of active social pressure put on intersex children to conform with the norm, such a “wish”, as separated from a fully informed consent, carries the high risk to be a result of medical and social pressure and should not be the basis for invasive and deferrable procedures.

The law does not differentiate between physical and potential (presumed) mental health needs
→There is a risk that the concept of a psychosocial emergency, which served for decades as an indication for ‘normalising’ treatment, will become acceptable again.

The law also fails to provide a clear definition of which interventions are to be considered “too urgent” and thus do not require following the family court procedure.  This is even more problematic considering that family courts are used to processing urgent applications within weeks and even days and that the law does not provide for the obligation to seek the court’s consent at least a posteriori;

# Composition of the interdisciplinary commission
The majority of the commission can still consist of staff of the same health care facility where the surgical procedure is to be performed
→ There is a clear risk of bias and possible conflict of interest in particular considering the still prevailing medicalisation and pathologisation of intersex bodies in medical centres specialising in “DSD” related interventions.

# Lack of provision of comprehensive information
There is a lack of guarantee of comprehensive information provided to parents and children, seeing as the involvement of a peer counselor is not mandatory
→ This precludes that full information, including non-medicalised information, is delivered to the child and their family – which is often not the case.

Other missing points to address in order to strengthen protection include: 

• The need to addresses the issues of prenatal treatments that aim to end pregnancies where it has been determined that the baby is intersex.
• The need to provide for a central register for medical records, which should be accessible through a low-threshold procedure, so that future intersex adults are able to access justice in the case that this law is breached. This can be ensured by creating a central register for the storage of patient files. This will also ensure that monitoring activities can be successfully carried out.
• Including an ongoing and sustainable monitoring mechanism, 
• The need to set out sanctions via the criminal and civil code, that explicitly account for the specific circumstances of vulnerability of the possible victim.
• Ensuring the training of professionals. 
• The provision of long-term counselling for children subjected to such harmful procedures,  and for parents who may wish to access such services
• Adequate provision for redress and reparation in the case that victims wish to seek legal remedy.
• The need to prohibit interventions carried out on intersex children who live in Germany, but whom are subjected to surgeries performed in other countries without any repercussions.

Footnote:

The German law creates a new legal term, “Variante der Geschlechtsentwicklung” (“variant of sex development”). This terminology should not be confused with the human rights compliant term “variation of sex characteristics”. Instead it is equivalent with the diagnostic and pathologising term “disorder/difference of sex development” and used this way throughout the act.

A detailed analysis can alsobe found in our press release from March, 2021

In its coalition contract, the current German government committed to improving the law and eliminating opportunities for circumvention.

Links:

German Law: https://bit.ly/3jxESk2

Press releases:
https://oiigermany.org/ein-steiniger-weg-fuer-menschenrechte/
https://oiieurope.org/a-good-first-step-germany-adopts-law-banning-igm/

Coalition contract: https://www.bundesregierung.de/breg-de/service/gesetzesvorhaben/koalitionsvertrag-2021-1990800