Dr. Katrina Karkazis of the Center for Biomedical Ethics at Stanford University recently published a suggested protocol for parents and doctors to reach a decision about whether to operate on intersex babies genitals. This involves 6 steps:
1. develop an appropriate, multidisciplinary team comprised of a variety of subspecialties such as endocrinology, urology, surgery, psychology/psychiatry, gynecology, pediatrics and social work.
2. Establish preferences for information and roles in decision-making. By gauging parents preferences early in the process, physicians can decrease the risk for misunderstanding patient needs and preferences. Physicians are encouraged to perceive and address parents’ emotions, with an emphasis on open communication.
3. Perceive and address emotions, Parents and physicians are uncomfortable discussing certain topics. One example is the future sexual sensation of the child who is potentially going to undergo surgery. Some physicians do not discuss that, although it is something that parents would need to know in order to make an informed decision.
4. Define concerns and values, common parental concerns include fears of teasing, ensuring that the child looks “normal” and using the least treatment intervention possible, all of these things come into play when deciding about surgery, but families rank them differently and it is integral to understand what they want to achieve with surgery and whether the operation will be able to achieve it.
5. Identify options and presenting evidence. Once an understanding of the parent’s needs and goals are established, a presentation of all treatment options and subsequent consequences should be objectively made to the parents. This should realistically explore the risks and benefits of treatment; examine parents’ ideas and assumptions while correcting their misperceptions; and ensure that they understand the nuances of the complex situation.
6. Share responsibility for making a decision. A shared decision must be made by the parents and the team. At this point in the process, parents should possess a technical understanding of the situation while the team will have an appreciation of the families best interests and hopes.
This decision making process does sound like a very small step forward. At least the parents are not panicking and making a rushed decision without all the options and outcomes made known to them. That being said, this suggested process still misses the most important point, it is NOT the parents or doctors decision to make, the only person who has the right to make such a decision is the intersex individual. Anything else is a serious violation of their human rights and bodily integrity, often with disastrous physical and psychological consequences. The only protocol that is needed is to wait until the child is old enough, and give them all the information to make an informed decision.
