Health News

Study recommends that parents, physicians share decisions in sex development disorder surgery

Fri, 23 Jul 2010 03:59:00 +0000

(SACRAMENTO, Calif.) — A shared decision-making process would assist doctors and parents who are facing the extraordinarily complex, challenging and controversial choices presented when infants are born with genetic or anatomical anomalies in sexual development and are being considered for elective corrective surgery, a new research paper suggests.

Owen

Sun, 25 Jul 2010 01:03:23 +0000

Decisions about unnecessary, cosmetic surgeries should NEVER be made by anyone other than the person whose body is to be altered by it. Gender and sexuality cannot be created or forced on anyone. Studies have shown since the 50s that you can't create someone else's gender identity. Risks of genital surgery include loss of sensation, loss of function, and , like any surgery, loss of life. Only the patients should have the right to make such a huge decision for themselves.

Natacha

Sun, 25 Jul 2010 09:37:03 +0000

This is an appalling paper and should be thoroughly rejected by the intersex community and indeed by the health/medical community. I believe it is utterly UNETHICAL in its approach in that it does not even mention the possibility of consulting the child.

Decisions about what surgery (if any) to perform are not those of the parents or doctors but those of the child alone, and should only be taken when the child is old enough to make an informed choice depending on how they feel about their gender identity.

Quite simply put, this paper is effectively describing how doctors, surgeons and parents should be complicit in the mutilation of a child. This sort of practice should be illegal.

Angela S.

Sun, 25 Jul 2010 10:28:14 +0000

There should only be one ethical approach to intersex babies and children; leave it as it is and leave it to the child to later decide if and in that case what surgery is going to happen.
ONLY absolutely necessary surgery should be allowed before the child can make an informed and fully voluntary decision!

Sun, 25 Jul 2010 10:55:34 +0000

This paper need to read by broader community so they are informed that this is not on!!! Somehow there is a huge need to educate the public about this issue. This practice has been going for long time. It need to be put to a STOP. We are in year 2010 now!!!!

Noorad

Sun, 25 Jul 2010 10:56:53 +0000

sorry... forgot to write my name :)
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This paper need to read by broader community so they are informed that this is not on!!! Somehow there is a huge need to educate the public about this issue. This practice has been going for long time. It need to be put to a STOP. We are in year 2010 now!!!!

Jennie Kermode

Sun, 25 Jul 2010 12:06:35 +0000

Performing purely cosmetic surgery on persons not able to give or withhold consent independently prioritises social functioning over bodily integrity, which should never be a part of medicine - especially when there is a significant amount of evidence to show that children with unusual genitals need not suffer social ostracism as a result. It is social practice which needs to change to make way for the diversity of bodies which occur in nature. Medicine can contribute to such changes by demonstrating equal respect for different body types - by recognising that intersex people are human beings.

Warren

Mon, 26 Jul 2010 16:59:29 +0000

This paper is appalling. No child's genitals should ever be mutilated no matter what they look like. There is no surgery that can make an intersex person un-intersex. If all intersex children were permitted to be intersex then we would all see how common it is and how it's no big deal. What the world needs is a paper about reducing the stigma surrounding the perfectly normal variety of human bodies.

Katrina Karkazis

Mon, 26 Jul 2010 18:47:32 +0000

Thanks to everyone for the comments. We appreciate the feedback and very much understand the place from which they come. Please read the paper in full as well. We wanted to share how this paper came about. It stemmed from Katrina’s research for the book, Fixing Sex, and Anne’s advocacy with families where we learned that not only did parents often feel that they were not fully informed about the risks and outcomes of genital surgery, but also that doctors were at times failing to tell parents important information during surgical consults, information that ethically should have been discussed.

Many physicians were saying that surgical outcome studies would help resolve debates over genital surgery, a view with which we disagree.

So the question was, given that parents are making decisions at a time of crisis and with inadequate information, how can we improve decision-making within the reality of how decisions are being approached today? What we mean by the latter part is that we both knew form our work it is not possible to bring an immediate halt to all genital surgeries. We believe, however, that many parents would not choose unnecessary surgeries if they were fully informed. Part of that information, as we argue in the paper, is the critique of surgery raised by adults with intersex conditions or DSD. Research suggests that a shared decision-making approach reduces the percentage of patients choosing elective surgery in many situations. It was and is our belief that if we improve this process by slowing it down, allowing parents to explore their fears, giving them all of the relevant information there would be less of a rush to surgery and likely less surgery. All too often there has been a rush and some parents have regretted their decisions. By following this process we felt parents might well come to the view many of you espouse – that it should be their child’s decision.

Katrina Karkazis
Center for Biomedical Ethics
Stanford University

Anne Tamar-Mattis
Advocates for Informed Choice
http://aiclegal.org/