Disorders of sex development: The quintessence of perennial controversies-III - DSD, transgenders and the judgment by the Hon'ble Supreme Court of India.

Dr. M. Bajpai

Disorders of sex development (DSD) have been previously known as DSD (intersex) disorders. Problems in these children often remain unrecognized. If left untreated, they face discrimination during the period of adolescence and then in adulthood. This is the most valuable period of their formative years and puts a deleterious effect on their psychological development. They are at the risk of getting disillusioned by the environment.

These children, born with ambiguous genitalia, have their gonads located at abnormal positions and at risk of damage due to high temperatures loosing fertility potential and risk of cancer. Their passage of passing urine (urethral meatus) is abnormally located and leads to infections of kidneys and kidney damage. Some of these children have their uterus in a position where there is a blockage of the outflow of secretions, leading to various irreversible consequences for their reproductive health.

Due to wide variability in presentation, DSDs are sometimes identified by etiology and sometimes by phenotype.[1] As a result overlap in describing some conditions, such as, 46 ovotesticular DSD and mosaicism as in 45,XO/XY is inevitable. All DSDs have the potential to cause psychosocial distress for patients and their families, as often appearance of genitals is in variance from the normal.

Infants born with an intersex condition are unable to make an informed decision (age and timing for surgery, type of surgery, ethical considerations)[2] to consent regarding their treatment, thus, leaving the issue to be dealt with by parents in the best interests of the child.[3] Some advocates believe such a decision should be made by the courts as parents should not have to make a potentially irreversible decision. Often these children are found in the various subgroups identified by the Hon'ble Supreme Court of India under the umbrella term transgenders (TG) as “Eunuchs.”[4]

The TG population consists of a group that go beyond the culturally defined categories of gender. Physical or genital sex assigned at birth is at variance with their gender identity. “TG” does not imply any specific form of sexual orientation; individuals present a range of sexual orientations just as exists in the society, in general. They commonly identify as a transwoman (male to female) or transman (female to male).

Indian mythology has many references to altered sexual states. The name Ardhanarishwara,[5] refers to God, who is half man and half woman, an androgynous deity. In various versions of Ramayana, there is reference to King ILA, who spent half his life as a man and half as a woman. In Mahabharata, Arjuna, one of the fiercest warriors of his time, spent a year of his life in intersexed condition. There is also a reference to King Bangasvana, who was changed into a woman by Lord Indra, whom he had offended. Another reference during Mahabharata is to Shikhandini.[5] He was born female, but raised like a man and trained in warfare. After an encounter with a Yaksha, Shikhandini came back as a man, was called Shikhandi and fathered children.

Transgender communities have existed in most parts of the world with their own local identities, customs and rituals. They are called hijras, jogappas, jogtas, shiv-shaktis and aravanis in India. The hijra community in India, which has a recorded history of more than 4,000 years, was considered to have special powers because of its third-gender status. It was part of a well-established ‘eunuch culture’ in many societies.

In recent times, the clinical treatment of patients with DSD has become highly contentious. One of the major disputes concerns the assignment of gender to the newborn with DSD. There are inconsistencies in the guidelines regarding assignment of gender with respect to the nature and severity of DSD viz a viz chromosomal and gonadal sex. Australia has become the first industrialized country known to have removed the legal barrier to such gender assignment by allowing an X, signifying unspecified sex or intersex, in the sex field of passports and the State of Victoria has issued a corresponding birth certificate that lists sex as “indeterminate — also known as intersex.”

A second major controversy focuses on early genital surgery for psychosocial reasons, for instance feminizing surgery of the external genitalia for gender confirmation or early vaginoplasty to facilitate later penetrative mating, because of the influence of genital surgery on erotic sensitivity and orgasm. Therefore, the Intersex Society of North America, a patient support organization in the United States, demanded in its “1995 Recommendations” that if any surgery on the genitals is not mandatory, that is, for medical reasons, it should be postponed until the DSD (intersex) individual is old enough to provide informed consent. While parents often do not agree to this, poor outcomes of surgery are often cited as the reason for this anxiety. We acknowledge activists' efforts, which help initiate a reassessment of management policies. Thus, collaboration between clinicians and activists is called for.[6]

Recommendations by the Hon’ble Supreme Court of India[4]

Hijras, Eunuchs, apart from binary gender, be treated as “third gender” for the purpose of safeguarding their rights under Part III of our Constitution and the laws made by the Parliament and the State Legislature.

TG persons’ right to decide their self-identified gender is also upheld and the Centre and State Governments are directed to grant legal recognition of their gender identity such as male, female or as third gender.

We direct the Centre and the State Governments to take steps to treat them as socially and educationally backward classes of citizens and extend all kinds of reservation in cases of admission in educational institutions and for public appointments.

Centre and State Governments are directed to operate separate HIV Sero-survellance Centers since Hijras/TGs face several sexual health issues.

Centre and State Governments should seriously address the problems being faced by Hijras/TGs such as fear, shame, gender dysphoria, social pressure, depression, suicidal tendencies, social stigma, etc. and any insistence for sex reassignment surgery (SRS) for declaring one's gender is immoral and illegal.

Centre and State Governments should take proper measures to provide medical care to TGs in the hospitals.

Gender reassignment surgery or SRS also known as sex affirmation surgery, gender affirmation surgery, or sex-change operation (SRS) is an expression for a surgical method. This approach brings about a change in a person's current sexual characteristics so that it resembles that of the other gender. It is part of a process for gender identity disorder/gender dysphoria in transsexual and TG people. It may also be performed on children with DSD.

Children with DSD can experience gender dysphoria later in life. Those with severe tendency in childhood go on to experience such feelings in adulthood.

Therefore, when addressing gender assignment, issues like fertility potential, surgical procedures[789101112131415] and disclosure to patients and their families should be central to the overall management. Long-term outcomes of individuals with DSD should also be explained to families.

In the era of assisted reproductive techniques and surrogacy, every attempt should be made to make them cognizant of the technological advances in assisted reproductive techniques through an educative awareness program:

Educative awareness to them about fertility and endocrine issues.

Sperm storage and fertility issues are given paramount importance while deciding sex of rearing in DSD.

Same principles should be applied while developing curriculum for educative awareness.

There is an urgent need to look into the issues, such as:

Appropriate models for the treatment and care of children born with DSD, and

An appropriate framework for decision-making and consent in relation to the treatment and care of children born with DSD.