Bioethics Discussion Blog: Human Enhancement in Down Syndrome: Is it Ethical?

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Thursday, August 03, 2006

Human Enhancement in Down Syndrome: Is it Ethical?

The issue of the ethics of human enhancement has so many different examples with multiple considerations that it is fascinating to dwell on that issue. On this blog we have already considered the role of physicians in the general issue of non-therapeutic cosmetic surgery and also the perhaps as yet esoteric use of nanotechnology in human enhancement. As you may have noticed on previous threads here on infant male circumcision, there is much consternation and concern about removal of normal foreskin of the infant’s penis for what purpose. If there is no medical benefit then should this procedure be acceptable? (Please don’t specifically write your opinion regarding circumcision on THIS thread but go to the circumcision thread.)

Another interesting human enhancement procedure to discuss is that of prescribing human growth hormone to children with normal growth hormone levels but of short stature or anticipated short stature because of short stature parents. I hope to go into this issue later.

The human enhancement issue that I would like to initiate in today’s post is the one discussed in the current August 2006 issue of Virtual Mentor “Adding burden to burden: cosmetic surgery for children with
Down syndrome” by Ann K. Suziedelis, PhD. The article starts out with the following:


Expectant parents dream of giving birth to a beautiful, robust and “perfect” baby. In reality this does not always happen. When things go wrong there is sometimes nothing parents can do to ameliorate the condition of their afflicted child. For others, the imperfections are so slight that they barely affect the child’s leading a normal life. It is a specific group caught in the middle of this spectrum—high-functioning children with Down syndrome (DS)—who evoke the ethical question discussed here. That is, is it ethical for parents to subject children with DS to purely cosmetic surgery that offers no medical benefit for them before the children are old enough to give any informed and freely considered assent?



Please go to Virtual Mentor and read the entire article and then return and write your opinions of whether it is ethical to subject a child, without the child’s assent, if not informed consent, to a surgery which may have no medical benefit but which some parents might feel would be in the child’s best interest and I think, perhaps, also in the parents own best interest. I will look forward toward reading your views. ..Maurice.

14 Comments:

At Thursday, August 03, 2006 9:01:00 PM, Anonymous Moof said...

Dr. Bernstein, this is something I've never really thought about, and I'm answering you after only giving myself about an hour to consider it. I reserve the right to change my mind after I've thought about it more carefully.

My gut reaction is that cosmetic surgery to soften the telltale Down Syndrome features is a bad idea. Yes, it could briefly forestall bullying, but as the article indicates, it would also cause others to expect more of the child (or later, adult,) than they're capable of giving.

I've known children who were very large for their ages ... big and tall. One in particular comes to mind. Everyone expected him to "act his size" rather than "act his age." It was very difficult for him, and left him with all sorts of self image problems which he carries even now, as an adult.

I think that people will often treat a child according to the way the child looks, and for a Down Syndrome child, that could be very important.

 
At Friday, August 04, 2006 7:55:00 AM, Blogger Maurice Bernstein, M.D. said...

Here is an example of human "enhancement" with motivation to enhance psychosocial aspects of a person's life through the action of physicians. This story was posted today by an ethicist on a bioethics listserv and is apparently from today's Reuters newsagency release.

"Three Indian doctors caught on camera apparently agreeing to amputate the healthy limbs of beggars are to be questioned by the Indian Medical Council, an official said on Tuesday.

Secretly-filmed footage taken by the CNN-IBN news channel and broadcast on Saturday showed one of the doctors asking for 10 000 rupees (about $215) to amputate a lower leg, leaving a stump that may draw sympathy -- and a few rupees -- from passersby.

He then suggests chopping off three fingers from the man's left hand.

Police said one of the three doctors had been questioned and denied the allegations, but that no arrests had been made.

The doctor, from Ghaziabad in the north Indian state of Uttar Pradesh and a satellite town of the capital, New Delhi, explains how he can stitch up blood vessels in a healthy limb, causing it to blacken with gangrene over a few days."


Now, whether these stories represent something more than urban myths, I don't know. But, thinking about it, they should provide us caution about considering the medicalization of procedures which have the intent for purposes other than treating a disease. ..Maurice.

 
At Friday, August 04, 2006 6:08:00 PM, Anonymous Moof said...

Dr. Bernstein, the following comment was left on my blog by "Scan Man" of "Scan Man's Notes":

This, if it is true, is horrible.
Forget organ theft, there are worse things happening in India..
Here’s a sample which may force most of you to revise your opinion of medicine in India.
This was a top news story a few days ago on TV. [...]


It's concerning exactly the same subject, but not from Reuters. Dr. "Scan Man" seemed to think that it was, indeed, more than an "urban myth."

As far as the following statement is concerned:

"caution about considering the medicalization of procedures which have the intent for purposes other than treating a disease

I only partially agree with you. If someone is born with a truly prominent, disfiguring feature, for example the complete absence of a chin ... or if a person suffers severe burns which leave them hideously disfigured -- those are not condition which can be considered diseases, however, people in such a position should be allowed to have a chance at normalcy.

I think that a congenital defect, such as cleft palate, also goes without saying.

However, I've never been fond of cosmetic surgery for vanity reasons ... and I don't think particularly highly of the physicians who will actually make people look like felines, or demons with embedded horns ... or, well, I don't even like the idea of breast enlargements or face lifts. I don't feel the same about breast reductions, because that can be a terrible handicap.

But now, Dr. Bernstein, I have to ask you if you really can compare frivolous cosmetic surgery with the horror that was uncovered in India?

 
At Friday, August 04, 2006 9:28:00 PM, Blogger Maurice Bernstein, M.D. said...

Based on two ethicists writing on the bioethics listserv I read who have had experience in India support that these amputations are real events and not urban legends. It's not clear whether all these procedures are performed by physicians or by others. Moof, if others perform this tragic action to facilitate the results of begging, that is another matter which the society of India must deal with. If the act is performed by physicians, that is a matter that all physicians should be concerned.

It is my view that all cosmetic surgery should be done for one purpose, to reverse deformity and restore function in patients with pathological conditions. For example, the absence of a mandible (chin) needs repair for functional restoration. The surgery for severe burns is beyond aesthetic implications. It is mainly for improvement of function. Surgery for conditions which are physically symptomatic such as breast reduction for massively enlarged breasts is in my view acceptable whereas surgery to enlarge breasts for personal concerns about appearance is not an acceptable medical practice.

Both medicalization of begging and medicalization of simple aesthetics, to me, are the wrong ways to utilize the skills and professional responsibilities of physicians. ..Maurice.

 
At Saturday, August 05, 2006 7:05:00 AM, Blogger Maurice Bernstein, M.D. said...

Moof, you wrote: "But now, Dr. Bernstein, I have to ask you if you really can compare frivolous cosmetic surgery with the horror that was uncovered in India?" On giving your question a bit of thought, there is insight to be gained by comparing the two. To me, there exists a slippery slope with regard to "on demand surgery" by physicians. On demand surgery for purely personal aesthetic cosmetic reasons is at the top end of the slope which then can lead us to the very bottom of the slope where the ugly amputation surgery for purely personal reasons to facilitate the results of begging is located. Shouldn't this relationship gives us all caution about the continued involvement of physicians performing cosmetic surgery when there is no medical condition or pathology? ..Maurice.

 
At Saturday, August 05, 2006 8:19:00 PM, Anonymous Moof said...

Dr. Bernstein, frankly, I still have a hard time connecting the two ...

One is creating a disability for the purpose of financial gain ... even if it's in pitiful quantities.

The other is indulging in a vanity ...

I understand that both are "on demand, unnecessary" surgeries, but their essence is still really quite different.

I believe the amputations violate the principle of not doing any harm, while the cosmetic surgery is more of a frivolous misapplication of what could otherwise be a useful skill.

I do not like unnecessary cosmetic surgery ... and I don't hold the physicians who do that sort of surgery in any particular esteem. To my way of thinking, they cheapen the profession.

I imagine my opinion could raise some ire in some circles ...

 
At Saturday, August 05, 2006 8:54:00 PM, Blogger Maurice Bernstein, M.D. said...

Moof, of course the end alteration of the human body of each of these extremes is vastly different but that is how it goes on a "slippery slope". The result of an act that is considered benign, if continued, could lead to actions the results of which seem more malignant. If the slippery slope is a reality for on demand surgery, then this should be a major ethical consideration regarding the participation of physicians in non-therapeutic human enhancement procedures. ..Maurice.

 
At Sunday, August 06, 2006 11:28:00 AM, Anonymous Jaine said...

Don’t most people have a positive association with the physical features of Down’s syndrome? The sweet, innocent, happy person within. Why mask that? It is now possible for high functioning Down’s syndrome students to attend university. Example: (http://www.disabilityworld.org/06-08_03/il/down.shtml). Making sure that Down’s syndrome students are provided with the right education seems a far more positive approach than trying to mask the syndrome.

Mona McNee (http://www.rrf.org.uk/perspective.htm) is a wonderful example of a mom who refused to believe that her Down's syndrome son could not learn to read (or children in general for that matter). I contacted Mona 10 years ago to ask about the reading programme she developed. In the course of our e-mail chats she talked about teaching her Down's syndrome son to read. I was unaware that Down’s syndrome kids could learn to read having never worked with a child with the syndrome. Mona’s approach, of changing how people see Down’s syndrome, seems far more constructive than trying to hide the syndrome via surgery.

 
At Monday, August 07, 2006 8:50:00 PM, Blogger Maurice Bernstein, M.D. said...

Jaine, the approach you noted "changing how people see Down’s syndrome, seems far more constructive than trying to hide the syndrome via surgery." seems to me more appropriate than performing surgeries which have not been shown to make any significant difference in the life of the Down Syndrome child. If the studies regarding the psychosocial outcome of these children is valid and there is shown to be no benefit to the child, then what we may be dealing with in parents who want the surgeries performed is not an ethical consideration of best interest for the child but one of best interest for the parents. Surgery, which bears significant operative risks for the child, should never be performed solely for the interest of the family. ..Maurice.

 
At Friday, September 01, 2006 10:32:00 AM, Anonymous Anonymous said...

Yes that's it Jaine: "the sweet, innocent,happy person within". Do you know my daughter - you seem to be able to judge her by her apperance with your comment.

Pre-judging a person is EXACTLY the issue. Not bullies or "normalizing" the person.

Like it or not, Jaine and the article by the good Dr. proves the point that basically everyone pre-judges a person with DS. Either positive or negative. I would prefer people to know what is within my daughter. Maybe plastic surgey would help, maybe not but at least if you are going to comment maybe think about the real issue.

 
At Monday, September 11, 2006 12:00:00 AM, Anonymous Anonymous said...

I saw a documentary on the practice, and it struck me as barbaric. The children looked, perhaps, less Downsy, but the DS look wasn't erased.
There are so many characteristics that the surgery can't possibly address, it seemed like they were chopping up the poor kid's face for the benefit of frightened parents. And believe me, the post-surgery pictures were truly nasty, it is not a trivial procedure.
My son is 8, with DS, but he's one of those kids where you can't tell immediately (unless he's wearing a hat, for some reason that emphasizes the shape of his eyes). He's quite smart, but his speech is terrible. He doesn't get out of the funny looks from strangers because it's hard to tell he has DS, he doesn't get treated like a typical kid on the playground. People form opinions based on a ga-zillion things: gait, posture, facial expression, and of course behavior. DS is what it is, my son is a fabulous little guy, but I don't believe that his life will be that much better than his DS peers because he looks less Downsy.

 
At Thursday, January 04, 2007 8:02:00 AM, Anonymous Anonymous said...

When oh when will society accept people for who they are? where did we get this idea of perfection from? if someone thinks your son or daughter is a better person because they "look less downsey" what does that say about the person? As a healthcare profesisonal working with people with disabilities i feel strongly that it is highly unethical for a person to have cosmetic surgery to make society feel better. if your child was born with red hair would you dye it blonde? if your son had green eyes instead of blue would you make him wear contacts?

 
At Sunday, January 14, 2007 10:32:00 AM, Anonymous Anonymous said...

Are you guys even thinking about when he's an adult? how hard would it be to get a job. The child could be smart, but because of a few features he would immediatly be labeled retarded. I think it would be cruel to not give him the chance of a normal life.

 
At Tuesday, October 07, 2008 8:03:00 AM, Blogger Down Syndrome Information Exchange said...

I am parent to an 8 year old with DS. Personally I would not subject her to surgery, she has been subjected to enough in her short life, but if SHE wanted to do it, I would support her.

This is not simple cosmetic surgery though. This is surgery that has the potential to change how a person is perceived and thus treated. It would make a huge difference in the expectations other would have of her, and could possibly raise her abilities because people would relate to her differently.

I see that difference all the time and how she reacts to it. I do understand why some people would do this. It's sad because it's not the child's fault, but the over whelming prejudice of society that causes the need.

 

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