Down syndrome, sexuality and ethical conflicts: a case report

Abstract

OIntroduction: Down syndrome is the most common genetic cause of intellectual disability. Although sexual desire is present, irrespective of the degree of impairment, many families play an overprotective role, treating affected individuals as children and as asexual persons. This may create gaps in their sexual education, increasing their vulnerability to assault and to risk behaviours. This report stresses the importance of sexual education for individuals with intellectual disability and draws attention to ethical matters, which may emerge in this context. Case description: A 22 year-old woman with the Down syndrome and no other significant past medical history came alone to a family planning appointment after starting a new relationship. She had already had sexual intercourse, although not with her current boyfriend. She was not aware of contraceptive methods, stating that, when it was used in her sexual contacts, it was on the initiative of her partners. She had consented to all sexual contacts but stated that she had felt mistreated once. After the presentation of several contraceptive options, she showed interest in subcutaneous implants. She was informed about the importance of preventing sexually transmitted diseases and about the correct use of condoms. A cervical cytology smear was performed. Since it was difficult to assess the capacity of this young woman to give informed consent, her mother was contacted. She stated that consent should be given by the patient, but was willing to help in informing her daughter about her options. Nothing was revealed to the mother about her daughter’s sexual life. Following a negative pregnancy test, a subcutaneous device was implanted. The need for correct use of condoms was repeated. Three months later, she returned for a follow-up family planning appointment, including a repeat evaluation of her status and further counselling on sexual and reproductive health. Comment: The health care team faced two challenging ethical questions in this case. Does intellectual disability render this woman incapable of giving informed consent? Could confidentiality be waived to allow her mother to increase her awareness of the need for contraception and to give informed consent? Health care professionals can empower parents to promote sexual health in individuals with intellectual disability including Down syndrome. The family doctor has a role to play in this effort.