Psychosocial and bioethical aspects of Disorders of Sexual Development in childhood

Current approaches to the treatment of Disorders of Sexual Development should prioritize the child's interests in order to achieve a good quality of life

DEFINITION

Los   Disorders del Development Sexual (TDS) They refer to a series of congenital disorders with chromosomal, gonadal or anatomical abnormalities of the sex organs.

These anomalies have a significant psychological impact on both those affected and their families, requiring a holistic and interprofessional approach. We must consider the associated comorbid, psychosocial, and cultural aspects that may affect the life cycle of the individual and their families.

The vast majority of professionals accept four entities Clinics of TDS (see Table 1 where each of them and their anatomical manifestations are briefly described). They are as follows:

• 46XY Intersex
• 46XX Intersex
• True gonadal intersexuality
• Complex or indeterminate intersexuality

Apart from these entities, where the etiopathogenic causes are usually well determined, there are others where the etiology remains unknown.

REPORT PSYCHOSOCIAL

In this exhibition we begin with a review of Ravendran y Deans (2019)¹

which we believe clearly and didactically addresses the debate and challenges currently posed by TDS, as well as the psychosocial problems arising from diagnosis and treatment protocols.

• Parental distress

We understand distracted A state of anxiety or psychological distress that prevents a person from successfully adapting to threatening factors. Ultimately, this represents an adaptive failure on the part of the individual in the face of situations that represent a significant change in their life and that they perceive as a threat to their quality of life or psychosocial well-being.

The researchers cited above report that 25% of parents experience a decline in their quality of life, 18% suffer from clinical depression, 25,4% from severe anxiety disorders, and 15% exhibit symptoms of post-traumatic stress. Their insecurity regarding the gender in which their affected children will be raised is also a central factor.

Parents must face two widely controversial situations: the ambiguity of genitalia and genetic sex, as well as the indication or contraindication of surgical correction.

The first is the greatest source of psychosocial distress, although the second also presents some drawbacks. Genital surgery is controversial due to the ambiguity of the genitals and the need to decide on one's gender. This is why some specialists advocate for the use of the word "intersex," a term that does not fully correspond to the anatomical and functional situation of the sexual organs and that "hides" a clearly ideological stance. An attempt is being made to introduce a third sex (male, female, and intersex) with the argument of reducing stigma and the presentation of psychopathology, forgetting that we are dealing with a medical anomaly.

Furthermore, a high level of parental psychopathological comorbidity has been detected independently of surgical intervention.

The various lobbies related to DSDs present as objectives the fight against stigmatization and the elimination of surgical interventions, for which they propose to provide psychosocial support to families and patients, gender self-determination and maintaining body integration.

However, while some studies note few psychopathological changes and improvements in quality of life after surgery, others argue the opposite. All would agree that at least 21% of parents will continue to experience distress symptoms after surgery.

• Quality of life in patients

A distinction is usually made between adults and children with DSD. In adults, mental disturbances are observed that are associated with a poorer quality of life. Similarly, a higher incidence of DSD has been described. psychiatric comorbidityObsessive-compulsive symptoms, anxiety, depression, paranoid ideation, psychoticism, and hostility are observed. During childhood, a worse quality of life y with performance academic  (Diaz start, 1999)² with a particular impact on the female sex.

It has been observed that one of the factors that alter the quality of life in patients would be the large number of examinations that these problems entail, so it has been proposed to reduce them as much as possible, as well as that the presence of professionals during it is minimal and good support from the professionals.

A holistic approach is advocated, implemented by an interprofessional team that includes mental health professionals, endocrinologists, gynecologists, urologists, biochemists, geneticists, and social workers. We must move towards the creation of Centers de ExcellenceHowever, given the low prevalence of TDS, it requires special planning that takes into account its economic sustainability.

• Sociocultural factors

Sexual orientation is often significantly influenced by the sociocultural context in which it is observed, typically including religious aspects and traditions that shape decision-making. In some cultures, male sex is valued more highly than female sex, which influences a greater likelihood of choosing male offspring. Similarly, the degree of stigma and/or social acceptance within sociocultural environments determines the incidence of suicide.

BIOETHICAL ASPECTS IN THE MANAGEMENT OF TDS

Lathrop and Cheney present a good approach. (2015)³Given the diagnostic challenges and clinical variety, deciding on sex assignment or treatment that best prioritizes the child's best interests is no easy task. Each case of gender dysphoria must be treated individually, and it is ethically imperative to consider the cultural context, the family, and the diagnosis.

In the 2006 Lawson Wilkins Pediatric Endocrine Society and the European Society for Pediatric EndocrinologyThey brought together 50 experts who published a Declaration de Consent which, in turn, recommend a series of principles to optimize the strategic handling of TDS cases. These would be:

1. Minimize physical risks.
2. Minimize psychological risks.
3. preserve or promote the ability to satisfy sexual relations
4. Leave options open for the future.
5. Respect the beliefs and wishes of the parents.

Many professionals recommend that decision-making in child protection systems be carried out following an ethical framework. Thus, during the 5th World Congress on Family, Law and Children's Rights (2009), the following guidelines were adopted: Beginning de  Halifax :

1. Minimize physical risks.
2. Minimize psychological risks.
3. preserve or promote the ability to satisfy sexual relations
4. Leave options open for the future.
5. Respect the beliefs and wishes of the parents.

In 2010, the German Network DSD/intersex They propose three ethical principles as a guide: promoting the well-being of the child and the future adult, respecting the child's right to participate in decisions, and respecting the parent-child relationship. The greatest difficulty of a principle-based ethic lies in how to resolve conflicts in a balanced way when some of these principles come into conflict.

In summary, the requirementsMinimum requirements for an ethical approach in TDS could be:

1. The approach to TDS should be carried out by a multidisciplinary team subject to a guide based on ethical principles: the 2006 Consensus Statement and/or the 2009 Halifax Resolution, among others.
2. Respect for the principle of the best interests of the child in the case of developmental disorders involves optimizing communication between healthcare professionals and parents regarding:
   1. the importance of maintaining fertility and sexual function in decision-making.
   2. The importance of sex assignment based on adult life and not just on the appearance of the newborn's genitals.
   3. Promote education and the protection of confidentiality so that parents can make decisions based on the best possible information and ethical principles.
3. The Intersex Society of North America proposes the initial and ongoing inclusion of mental health professionals.

Addressing sexual dysfunction presents a significant challenge in decision-making regarding fertility, sexual functioning, and sexual identity, given the lack of complete knowledge about the best course of action for the future.

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REFERENCES

1. Ravendran K and Deans R. The Psychosocial Impact of Disorders of Sexual Development. J Sexual Med Reprod Health, 2019, 2:4 [↩]
2. Diaz-atienza J; Blánquez-Rodríguez, MP. Behavioral and neuropsychological phenotype in XXYY syndrome: a longitudinal case study. 1999, Rev Neurol, Nov 16-30;29(10):926-9 [↩]
3. Lathrop, B et Cheney TB. Ethical perspectives on management of disorders of development in children. Medicolegal and Bioethics, 2015:5 27-34 [↩]