Ethical Treatment

To get a better grasp on how different organizations suggest approaching treatment of intersex infants I looked at documents put together by the National Library of Medicine and Comprehensive Child and Adolescent Nursing. Because there has not been much research done on the long-term effects of surgery on intersex infants, much of the treatment guides focus on the ethical aspects and the shifting view on gender identity. Below are summaries of the two different approaches.

National Library of Medicine

Published on Medline Plus, the medical encyclopedia entry on intersex from the National Library of Medicine first gives an overview of the different types of DSD: 46 XX intersex, 46 XY intersex, true gonadal intersex, and complex or undetermined intersex. An overview of the various categories and potential causes are given. These distinct types range from physical, hormonal, and genetic abnormalities. And to clarify for anyone who doesn’t know, sex and gender is not quite as simple as XX and XY. Because of the extreme complexity of gender identity, specifically in those with DSD, the suggested first step in treatment from the National Library of Medicine is to bring together a group of experts from the health care field to guide the parents or guardians. The most up to date research should be given on the long and short term effects of different treatment, while many needed data is still missing what has been acquired should be made known. Traditionally, the decision of the gender was determined solely on what the most obvious genitalia was using a phall-o-meter (pictured below). If this was not obvious, the child would typically be assigned a female as the surgery is easier to perform. Today, most experts acknowledge that “[c]hromosomal, neural, hormonal, psychological, and behavioral factors can all influence gender identity” and gender assignment shouldn’t be based solely on physical characteristics. It is their opinion that gender assignment, specifically surgery, should be withheld as long as possible and if possible, the child should be involved in this decision.

Comprehensive Child and Adolescent Nursing

Ethical Decision-Making in The Dilemma of The Intersex Infant, published in the Comprehensive Child and Adolescent Nursing, gives an action plan for treating intersex infants in a manner that is ethical, that respects the parent or guardian’s religious and ideological beliefs, and is best for the child. The first step is to inform the parents or guardians of the ethics involved in the decision and gather all professionals necessary to assist them in the decision-making process. This team of professionals should include “healthcare professionals specializing in disorders of sex development including nurses, mental health professionals, medical bioethicists, and pediatricians specializing in surgery, urology, endocrinology, and neonatology in addition to the parents/legal guardians”. The second step is to create an open and non-judgmental environment for all parties involved to voice their questions and concerns, including the parents or guardians and the doctors. This should create a ‘no stone unturned’ situation where every aspect of the situation is understood by all. The third step is to identify any medical emergency present. Many intersex infants will need some form of treatment for bodily functions to be performed normally. The parents or guardians should understand and consent to these treatments before they are preformed and any long lasting or permanent side effects should be understood by all. The fourth step is gather all relevant information, this should include research and testing, about the treatment. This step ensures that all people involved are making an informed decision. The fifth step in to understand any legal issues surrounding the treatment. This could mean what treatment a doctor can perform to protect them from legal trouble and state laws for issuing birth certificates. Unfortunately, in some states, a gender is necessary for the issuing of a birth certificate. The sixth step is to have an open discussion where the parents or guardians can express what their preference for treatment is and ask any questions on the professional opinions from the experts. The seventh step in the decision of what the treatment will be. The parents or guardians are the final decision makers. The final step is to plan follow-up for the family and the patient. 

 

The main ideas in both sources, what the appropriate steps are for treatment of intersex infants, are what I am delving into for this blog. My first source in this post focuses a lot more on the well being of the child in question while my second source focuses more on what is more in line, ethically speaking, with the parent or guardian’s moral beliefs are. While both of these sources want what is best for the child, the first source achieves this through their mental health, physical health, and correct gender identity. The second source achieves this by having the child grow up in a more comfortable environment because the child’s identity has been chosen by their parents. I think that the authors of the first source would argue that the most important thing for the child is that they feel they have the right body and have the right to decide who they are while the authors of the second source would argue that fitting in with their family and the social aspect of their lives are more important. I find myself agreeing much more with the first source. I think that the child should have the right to determine what their body looks like and who they feel they are. I would like to mention that sometimes that might mean abstaining from gender assignment surgery all together. Nature has made it clear that we are not all born male or female, and I don’t think someone should have to choose one if they don’t feel that way.

After evaluating these sources, I am curious about what studies have been conducted, or are currently being conducted, on the psychological effects of treatment on intersex infants. Since there is not a lot of information out there I am having trouble finding data on this, but I’ll keep searching. I would also like to explore people’s personal stories of their treatment experiences and where they stand on this issue. Thank you all for reading.