Background of Colombia Decisions
by Julie A. Greenberg and Cheryl Chase (1999)
BOGOTA -- The Constitutional Court of Colombia has significantly limited the ability of doctors and parents to surgically alter the genitalia of intersexed children.
The two specific cases before the Court concerned a two year old and an eight year old child. In both cases, the Court found that consent given by the parents for genital surgery on the child had been invalid.
The decision dramatically limits the ability of doctors in Colombia to perform early genital surgery on intersexed infants. The Court has established new rules restricting parents' authority to authorize genital surgery on their intersexed children, with the goal of forcing parents to put the child's best interest ahead of their own fears and concerns about sexual ambiguity.
Surgeries in US Continue without Legal Restriction
In the past six years, a growing number of people harmed by such surgeries in the US and other countries have spoken out against the practice, but professional medical organizations such as the American Academy of Pediatrics and the Lawson Wilkins Pediatric Endocrine Society have been unwilling to admit former patients to decision making panels.
"Until courts in the US adopt an enlightened approach similar to Colombia,"notes Cheryl Chase, director of the Intersex Society of North America (ISNA),"doctors will continue to operate on infants if the parents are uncomfortable with their child's appearance." For instance, Dr. Linda Shortliffe,Chief of Pediatric Urology at Stanford University Medical Center, told Stanford Magazine in 1997 that she operates on the genitals of newborns when "we consider it sort of an emergency because it is upsetting to parents."
Historic Decision Goes Beyond Surgery
The Court held that intersexed people constitute a minority entitled to protection by the State against discrimination. Surgery may actually be a violation of autonomy and bodily integrity, motivated by parents' intolerance of their own children's sexual difference.
"This is an historic decision," said Chase. That judgment was echoed by Dr. Rodrigo Uprimny, the Clerk of the Court, in an informal English summary of the decisions. The Court had been unable to rely on legal precedent,Dr. Uprimny noted, because it could find no case in which any other high court in the world had considered the issue.
The Court's decision makes extensive reference to an amicus brief supplied by ISNA, which included a 10,000 word argument, hundreds of pages of articles and books about intersexuality, and two video tapes of intersexed people speaking about their lives. "The Constitutional Court is very grateful to ISNA and many other scholars who helped us with this case," said Dr. Uprimny.
Medical authorities in the US who advocate surgery have discounted ISNA's voice or misrepresented its position. In Colombia, the Judges provided medical authorities with a copy of ISNA's arguments and explictly requested a response.Some refused, while others acknowledged that they had no evidence with which to refute ISNA's position.
Who May Consent to Genital Surgery on Intersex Infants?
The Court considered that parents' authority to consent to medical procedures on behalf of children who are too young to consent for themselves depends upon 1) the exigency and urgency of the procedure; 2) how invasive and risky the procedure is; and 3) the age and degree of autonomy of the child. For instance, it is obvious that parents may consent to a vaccination for their child, and equally obvious that they may not force a teenage child to undergo cosmetic surgery.
Although surgical modification of intersexed infants has been standard medical practice for some forty years, there is no evidence that it is necessary,safe, or effective, or that an early decision is urgent. An alternate model,in which surgery is performed only if desired by a patient who consents for herself, is backed by ISNA and a growing number of medical experts.These factors weigh against authorizing parents to consent on behalf of their children.
On the other hand, Colombia has an interest in protecting the privacy and autonomy of the family. The State assumes that parents will act in the best interests of their children and that parents are in the best position to determine what is best for their particular child. Therefore, the State should not be allowed to intervene unless there is a clear risk to the child.
In the case of intersexed infants however, the Court found that parents are likely to make decisions based upon their own fears and concerns rather than what is best for the child, especially if they are pressed to decide quickly. "In some sense, parents who consent to the surgery may actually be discriminating against their own children," noted Dr. Uprimny.
A New Category of Consent
The Court required the legal and medical communities to establish a new category of consent, "qualified, persistent informed consent,"intended to force parental decisions to take into account only the child's interest.
The Judges held that parents may consent to surgery only if they have been given accurate information about the risks and the existence of alternate treatment paradigms which reject early surgery. Furthermore, the consent must be in written form, and must be given on more than one occasion, over an extended period of time, so that the parents have time to really understand their child's condition and the ramifications of alternate treatment paradigms.
For children over five, parents cannot consent, because the child has achieved an autonomy that must be respected, and because the child has already developed a gender identity, which reduces the urgency of a decision as well as any potential benefits of surgery.
In the case of the two year old, the Judges found the parents' consent invalid because it was not a "qualified and persistent informed consent"(Sentencia T-551/99 Bogota, Aug 2, 1999). The consent of the parents of the eight year old was likewise invalid because the child is too old for a surrogate to consent on her behalf (Sentencia SU-337/99, Bogota, May 12,1999).
The decisions came after exhaustive consultations, more than a year long,in which the Court surveyed experts both within Colombia and abroad on the medical, psychological, ethical, and legal aspects. The decisions reference a number of opinions by the European Court on Human Rights and previous opinions of the Constitutional Court of Colombia on protections for homosexuals and transexuals. Among sources consulted domestically were the Medical Faculty of the University of Javeriana, the Colombian Psychological Society, the Colombian Psychiatric Society, the Colombian Society for Urology, and Dr.Bernard Ochoa (a surgeon who is considered Colombia's foremost scientific authority on intersexuality).
The only point upon which proponents and critics of the surgery seemed to agree, found the Judges, is that there are no long-term studies which would substantiate either position.
Given the increasingly controversial nature of treatment by early surgery,the Court held the criticism by intersexed people themselves to be of "decisive importance."
After weighing arguments pro and con, the Court provided some of the surgery advocates with a copy of ISNA's amicus brief and asked for their opinion.While at least one medical body conceded that they "have no theoretical or scientific evidence to refute ISNA's position," others ignored the Court's request. The Judges held these medical authorities up for specific criticism in its decision: "What professional risk can arise in this controversy? These discussions can have only positive effect, since the medical community is afforded the opportunity to better present its arguments,while the Constitutional Judge arrives at a better understanding of these complex matters."
The two cases before the court grew out of what might be called Colombia's own "John/Joan" case.
In 1997, media all over the world carried the story of "John/Joan."John was a boy whose penis was accidentally destroyed during circumcision in the 1960s. Although he was not intersexed, doctors decided that the best way to manage a boy without a penis was to perform a sex change on him.For decades, it was incorrectly reported that the sex reassignment had been successful, and that "John" had grown into a well adjusted woman,"Joan."
In 1997 the actual outcome of the "John/Joan" case was reported in a medical journal. Though doctors removed his penis and testes and administered estrogen, John never developed a female identity. Today he lives once again as a man, is married to a woman, and has adopted her children from a previous marriage. He has had surgery to make his genitals look more masculine and to remove the breasts that doctors created by giving him estrogen.
In 1995, a young man who had been treated in similar fashion petitioned the Colombian Constitutional Court for redress. After his penis was destroyed in a traumatic accident during infancy, doctors performed a surgical sex reassignment. But, like "John/Joan," the Colombian boy never developed a female gender identity. Ultimately, he argued his case against medical hubris before the high Court and won.
In that case, the Court held (Sentencia T-477/95) that parents cannot give consent on a child's behalf to surgeries intended to determine sexual identity.The Constitutional guarantee of free development of one's own personality implies a right to define one's own sexual identity.
What apparently happened next is that some surgeons specializing in intersexuality recommended surgery to parents of intersexed children, but refused to perform the surgery, on the basis of the 1995 decision. The parents of the two children then brought suit, requesting the Court to order the surgery.
Although the high Court found that adequate consent had not been given in either case, surgeons operated on the two year old girl just three days before the Court began to hear the case. Although surgery had already occurred,the Judges felt the issues raised were important enough to deliberate the case anyway.
Shifting Social Attitudes
The Constitutional Court has the final word on constitutional matters, so no appeal is possible. However the Court noted that social attitudes toward intersexed people are in flux. Both decisions concluded with a quote from Dr. William Reiner of Johns Hopkins: "All of us must listen to these people, and we must learn not merely to live with them, but also to learn from them." The Court reserved the option of altering its opinion as social attitudes progress.
The Court made a point of sending its decision to medical and public health authorities including the National Academy of Medicine, the Colombian Urological Society, and the Ministry of Health. In addition, while the names of the parents and children involved in the cases will be kept private, the Court found it important to enter all of the materials produced by its year-long investigation into the public record.
It is now the responsibility, the Judges noted, of public authorities, the medical community, and ordinary citizens "to open a space to these people, who until now have been silenced."
The Intersex Society of North America (ISNA) works to create a world free of shame, secrecy, and genital mutilation for intersex people. For more information, visit our web site at http://www.isna.org