Social Question

j0ey's avatar

Do you think this was an ethical decision (please read description)

Asked by j0ey (2424points) April 19th, 2010

I recently read a case study about a young women who went to the doctors because she was experiencing pain during sex, and wanted to have children, but had never had her period.

She was an attractive girl, with a loving husband….and appeared to be like any other women in their 20s.

However, after a thorough investigation, doctors found that her vagina was only 4cm long, she didn’t have a properly developed uterus, and actually had internal testicles in her abdomen.

Blood tests revealed that she was genetically male, and suffered from complete androgenic insensitivity syndrome (basically means that “he” has defective testosterone receptors, so while in the womb, developed physically into more of a female…because the testes release “female” hormones as well as “male” hormones).

Anyway the doctors suggested surgery to lengthen her vagina, told her she was infertile, suggested her and her husband consider adoption, and sent her on her way.

They never told her the truth about her condition. To this day she has no idea….yet her case study is in the pages of my text book.

Do you think it was right of the doctors to keep this information from the patient?

If it was you, would you have preferred to know the truth?

How do you think doctors came to the conclusion it was best not to tell her?

Observing members: 0 Composing members: 0

31 Answers

cazzie's avatar

All humans start out a default female. Not until those receptors trigger do the male traits begin to form. For the condition you describe, the person IS female, but an infertile one.

As doctors, the first rule should be ‘Do no harm.’ Telling this person the details of her condition would not make any difference to improve her outcome, in fact, it would probably do more damage. If she had been a sexually confused teen, telling her could probably make sense, but the fact that her sexually and gender role was solidly formed to her psychologically, the details could possibly harm her sense of self for no other reason than just dealing out facts.

Just my opinion.

JeffVader's avatar

I think that just about breaks every ethical code I can think of….. the first person to have been informed should have been the patient, then it should have been up to her / him to decide who to tell, if anyone.

cheebdragon's avatar

And how did you come to learn this information?...

j0ey's avatar

@cazzie….no she IS biologically male, just not a developed male. It is an actual syndrome that only males can suffer from, she has the XY chromosomes, and still has testicles that release hormones, not ovaries. The testes are already formed when androgenic insensitivity syndrome effects development.

I agree with what you are saying about the decision…..

However, do you think the doctors would have made a different decision if she was a lesbian? Or was single, and not trying to conceive? If you were in those situations, you would still have settled into the feminine gender role, even if it isn’t “conventional”.

DarkScribe's avatar

A woman walked into a Doctor’s surgery asking for help. A woman walked out. I think that she was helped.

j0ey's avatar

@cheebdragon I am a third year psychology student

cheebdragon's avatar

Well in that case, It seems highly unethical that her doctor felt it was okay to share this information with everyone, but her…....

Pandora's avatar

I would not want to know. If I am perfectly content with my life and telling me would not change my ability to bear children than I see no reason to know. If she was a female in every other way since birth and always felt female than why tear her life apart. She’s not going to die from it.
Doctors withhold stuff all the time. I’ve had blood test and they only tell you any stuff of real concern. When there are things that may have a tiny concern they usually don’t tell if its no big deal because it won’t really harm you and sometimes, some people go off the deep end. I had a friend who the doctor told her her red blood cells where a little low but no real concern. Just for her to eat better. So she heard onions where good for that and ate a lot of onions. She got onion poisoning. Some things are left best alone.
I agree with @DarkScribe A woman walked into a Doctor’s surgery asking for help. A woman walked out. I think that she was helped.

j0ey's avatar

@cheebdragon thats how I feel….If he didn’t tell her, no one should know. Not that she was identified to everyone, but I still feel its not quite right.

p.s. your avi is so cute :)

thriftymaid's avatar

Everything that was discovered about her body as a result of her visiting this doctor should have been disclosed to her. This was an unethical decision. In what country did this happen?

filmfann's avatar

There was a case with exactly this condition on House.
When I think of the sensitive way he dealt with it, I think the doctors in your stated case were saints.

wonderingwhy's avatar

Well, here’s the problem with the decision as I see it. At what point on the spectrum of information does the doctor decide what information to tell you or not tell you? Someone else is essentially deciding what is relevant for you to know and what isn’t. Where do you draw the line?

Do you think it was right of the doctors to keep this information from the patient?
Only if the decision to keep such types of information from them was made by the patient.

If it was you, would you have preferred to know the truth?
Every time.

How do you think doctors came to the conclusion it was best not to tell her?
Likely deciding that it was an irrelevant factor in the patients life, knowledge of which could be of no use and would likely beget unnecessary stress and potentially harmful consequences.

DarkScribe's avatar

A Doctor’s primary concern – a least a Doctor who I would respect, is the welfare of his patient. First do no harm. Not unnecessarily distressing her has ensured that he has not done harm. He has looked after both her psychological and her physiological health – what more do can anyone want from a Doctor? Blunt non-essential – can’t be changed – facts that might well distress the patient and possibly destroy her relationship and her future?

JeffVader's avatar

@DarkScribe Well…. the truth would be a nice start!

DarkScribe's avatar

@JeffVader Well…. the truth would be a nice start!

In many cases it wouldn’t. It is a trite cliche – little more.

A William Blake saying that I am fond of, not applicable in this case but valid in response to your suggestion is.

“A truth that is told with bad intent
Beats all the lies you can invent.”

Truth is not always a good thing.

thriftymaid's avatar

@DarkScribe As an individual human being, a woman, and a consumer, I would expect complete honestly as to any and all facts discovered about my body from a physical examination, lab work, etc. I feel I have the right to know, and a doctor has a duty to disclose any and all information discovered.

JeffVader's avatar

@DarkScribe I respectfully disagree in its entirety. & while I respect the words of Blake, he’s just a man expressing an opinion which is no more valid than that of yours or mine. As a Doctor, his responsibility is to his patient, not their family, friends, second cousins, neighbours, acquaintances or anyone else. The Doctors responsibility is not to decide upon the distressing nature of information & make judgements as to whether or not the patient can deal with it. The Doctors responsibility is to tell the truth, so the patient can decide what’s best for themselves….. If this case is real, the Doctor lied to his patient, & broke Doctor / patient confidentiality, & consequently should be struck off for professional misconduct. This isn’t the 50’s when Doctor knew best, that’s the sort of attitude that allowed Dr Harrold Shipman to happen.

DarkScribe's avatar


That is ok, we will disagree – people often do. For instance we have no way of knowing how well this Doctor knew this patient – there are all manner of possible influences. I see no reason to cause distress if it is not offering a potential for a more positive outcome.

JeffVader's avatar

@DarkScribe Hehe, yeh, sorry about that…. the whole Shipman, & Doctors playing god is still quite sensitive over here, & I respect your considered reply.

cazzie's avatar

You know… I’ve been thinking about this all day… and the patient really does have a right to know what the cause of her infertility is. It would be so much worse if the doctor had told her to ‘just keep trying’ for a baby… or some such lame thing that wasn’t true. Not all doctors are trained in this sort of thing (but certainly should be…) and perhaps that is why you’re studying this ‘case study’ now. Ethically, she absolutely has the right to know everything the doctor discovers about her. It’s up to the doctor himself/herself as to whether they are the one to tell the news, or whether they refer her. If they don’t feel they can.. they would ethically be obliged to refer her to a specialist in the field. But perhaps if she expressed the need to NOT know all the details completely, the doctor would have to respect that as well. After all, it’s not fatal and there is nothing that can be done.

Oh, and @cheebdragon and @j0ey If doctors didn’t share case studies with each other they would NEVER learn ANYTHING! Of course these things are held up and presented in papers and text books. This is a classic study example in ethics and it’s old. Rest assured that these days, the patient would be told and her life possibly turned upside down, but, depending on her insurance if she’s in America, she could get the care and counselling she needs.

CMaz's avatar

I would like to know when this took place. Around what year?

cazzie's avatar

@ChazMaz the whole idea of sharing these cases is to keep the people involved anonymous. It most likely involved not just one person, but was standard practice in cases like this in the 50’s and 60’s.

CMaz's avatar

I can see that today the patient would be told everything.

Back then I can understand the doctor holding back information.

Buttonstc's avatar

I’m not really clear about why it is assumed that she was perfectly content in being a woman and never had questions or doubts about it.

How could the Doctor have known that with such certainty?

But if this case did take place in the 50s or so that explains a lot. The attitudes of the medical profession were far more paternalistic back then, and especially concerning women.

But reading this question reminded me of another case which took place in Canada.

The full story was told in a segment on (I believe) the program 20/20 or a similar newsmagazine.

It involved twin babies where the male baby had to have the penis amputated due to a botched circumcision.

The parents were then instructed to never tell the child and raise it as a girl and everything would be fine.

The case was being supervised and ongoing follow up done every several years by a guy whose theory was that gender identity was not innate but rather was dependent upon how the child was raised. Obviously he was wrong.

This poor guy went through years of confusion and doubts as well as trying suicide as a term before the truth finally came out.

It was a truly horrible story and illustrates poignantly the necessity for truth in medical matters.

Simone_De_Beauvoir's avatar

I consider this unethical. But doctors aren’t trained to discuss these matters whatsoever and continue using their power to legitimize the two legal sexes instead of informing people with the truth.

cazzie's avatar

@Simone_De_Beauvoir I guess I’ve been lucky to have known some enlightened doctors and other professionals. Living in New Zealand, I saw the culture of Fa’afafine. Meeting a few of these individuals was enlightening and empowering. They were proud of who they were, were valued as individuals in their roles in their community and were confident in their sexuality, even though it was not the two so called ‘legitimized’ legal sexes.

MagsRags's avatar

I was guessing this was an old case report. We used to call this testicular feminization, now it is called androgen insensitivity syndrome.

It wouldn’t be handled like that today. In addition to the ethics of full disclosure or not, there is an increased risk of testicular cancer if the undescended testicles are not removed.

Simone_De_Beauvoir's avatar

@cazzie I have met some doctors (at Creating Change, an lgbt conference) in 2005 and they were part of Physicians for Social Responsibility and were knowledgeable about the Intersex Association of North America (it might be called something else now) and their guidelines for these kinds of cases.

cazzie's avatar

Yes.. I forgot for a moment that we’re not here to be our brother’s keeper, but our brother’s liberator.

faye's avatar

I can’t get past 4cm vagina. That is not even 2 inches. Surely that would need explained!! I agree she should have been told the truth. Information is not bad or good. She could decide what to do with the knowledge.

Pied_Pfeffer's avatar

It sounds like an urban legend to me. What young lady in her 20’s with access to a doctor would go to one about sexual discomfort but has never been to one because her menstrual cycle never started? And what doctor would not tell her of their findings? It’s bound to come out when the problem isn’t solved and she goes to another doctor.

Please share the source of the case study with us. Otherwise, I’m chalking the story up to bunk (but I’ve enjoyed reading the responses.)

Answer this question




to answer.
Your answer will be saved while you login or join.

Have a question? Ask Fluther!

What do you know more about?
Knowledge Networking @ Fluther