The Rights of the Intersex Child
One out of 2000 infants is born with intersex genitalia. Intersex children are those who were formerly known as "hermaphrodites." They have some degree of mixed genitalia.
NOCIRC believes that, in accordance with the Declaration of the First International Symposium on Circumcision1 and the Valencia Declaration of Sexual Rights,2 intersex children have a right to protection of the integrity of their body, even though it may not conform to a male or female norm. Such children similarly have a right to protection from unnecessary investigation and treatment by the Charter for Children in Hospital.3
The needs and interests of the child must be the focus of any treatment plan.4 Children should have an opportunity to consent to their treatment.4 The Committee on Bioethics of the American Academy of Pediatrics (AAP), in its 1995 policy statement, Informed Consent, Parental Permission, and Assent in Pediatric Practice,5 clearly indicates that non-essential surgery should be deferred until the child is of an age at which s/he may consent for her/himself.
Parental discretion is not absolute, and professionals must maintain an independent obligation to protect the child's interests.4 Moreover, The Committee on Bioethics states that parent rights are limited to the granting of permission for diagnosis and treatment.5 The physician responsibilities are to the child patient and patient care should be based on the child's needs and not the needs of someone else.4,5
Immediate surgery to alter intersex genitalia should be reserved for those rare life-threatening conditions that demand immediate intervention. Kipnis and Diamond considered the ethical problems inherent in genital altering surgery on intersex legally incompetent non-consenting minors; they call for a moratorium on non-therapeutic surgery to alter the genitals of non-consenting intersex children.7 The British Medical Association has joined others in calling for the reform of the intersex care and the deferral of non-essential genital alteration surgery.8
Parental consent to non-therapeutic alteration of children's genitals may be unlawful. The New Jersey Supreme Court holds that parents do not have the power to consent to irreversible alteration of an incompetent child's genitals to effect non-therapeutic sterilization.9 Similar reasoning also may apply to non-therapeutic irreversible alteration of an incompetent intersex child's genitals.
If that should be the case, then parental consent to non-therapeutic genital alteration surgery would be vitiated. If consent is vitiated, then any surgical procedure would be an act of battery,10 thus making the surgeon liable to the child for any injury caused by genital alteration surgery.
In spite of these legal and ethical considerations, the Committee on Genetics of the American Academy of Pediatrics recently issued a policy statement, Evaluation of the Newborn with Developmental Anomalies of the External Genitalia.11 This statement characterizes the birth of an intersex child as a "social emergency" that calls for immediate treatment and surgery to calm the fears and emotions of the parents. This policy violates the AAP's own guidelines in pediatric bioethics, fails to recognize the fundamental legal and human right of the intersex child to bodily integrity, and so is deeply flawed.
The Committee on Genetics has abandoned bioethics, law, and the right of the child to protection of bodily integrity, protection from unnecessary surgery, and the right to informed consent; while supporting relief of the parents' so-called "social emergency" through non-therapeutic genital altering surgery on the non-consenting legally incompetent minor child. The AAP policy statement, Evaluation of the Newborn with Developmental Anomalies of the External Genitalia,11 ethically and legally, is unacceptable.
NOCIRC rejects the views of the Committee on Genetics as expressed in that statement. Intersexuality is not a life-threatening illness, except perhaps in rare cases, so immediate surgery usually is not required. It is the intersex child, and not the parents, who is the patient. It is the intersex child, and not the parents, who must dwell within her/his body. It is the intersex child, and not the parents, who legally must decide about body-altering irreversible surgery when s/he is of age.References
- Declaration of the First International Symposium on Circumcision, First International Symposium on Circumcision. Anaheim, California, adopted March 3, 1989.
- Valencia Declaration of Sexual Rights. XIII World Congress of Sexology Valencia, Spain, adopted June 1997.
- Alderson P. European charter of children's rights. Bulletin of Medical Ethics 1993;October:13-15.
- Fleischman AL, Nolan K, Dubler NN, et al. Caring for gravely ill children. Pediatrics 1994;94:433-43.
- Shield JPH, Baum JD. Children's consent to treatment. BMJ 1994;308:1182-83.
- American Academy of Pediatrics Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995;95(2):314-317.
- Kipnis K, Diamond M. Pediatric ethics and the surgical assignment of sex. J Clin Ethics 1998;9(4):398-410.
- Creighton S, Minto C. Managing Intersex. (Editorial) BMJ 2001;323:1264-1265.
- In the Matter of Lee Ann Grady, 85 NJ 235, 426 A.2d 467 (1981).
- J. Steven Svoboda, Robert S. Van Howe, James G. Dwyer, Informed Consent for Neonatal Circumcision: An Ethical and Legal Conundrum. 17 J Contemporary Health Law Policy 61 (2000).
- Committee on Genetics. Evaluation of the Newborn With Developmental Anomalies of the External Genitalia. Pediatrics 2000;106(1); 138-142.