Insights | Medical Ethics | Who should decide what needs a cure?

Understanding our World: The continuing impact of the Holocaust

Medical Ethics
Legitimizing the Unthinkable

During the early 20th Century, advocates of eugenics throughout the western world argued that the use of modern medicine and costly welfare programs to keep people with disabilities alive allowed the "unfit" to reproduce and contributed to the "degeneration" of society. Once Hitler took power in Germany 1933, scientists and medical proponents of eugenics legitimized the Nazis' racist ideology and subsequent murderous policies.

We are faced today with many ethical questions about the legitimate uses of medicine and science. During the "Legitimizing the Unthinkable" program, Joan Ringelheim posed the question of "cure" to Harriet McBryde Johnson.

View video of Harriet McBryde Johnson's response to Joan Ringelheim's question.

Johnson's concluding statement -- "Does that make sense?" -- points to the complexity of defining disability, identity, the role of medicine, and the concept of cure in society today. Who should decide what needs a cure?

Who should decide what needs a cure?

SUBMIT NEW MESSAGES

U.S. Holocaust Memorial Museum Editors
March 13, 2006 02:59 PM

NB
March 14, 2006 06:48 PM

If we "cure" everything, we wouldn't have people like Ms. Johnson among us, and that wouldn't make the world a better place, would it. I don't know who should decide what conditions need to be cured, but I don't think it should be up to me or any one individual to say that such and such a group of people should not exist, or should be prevented from existing, because of a particular characteristic. I would be interested in knowing more about how it was for Ms. Johnson growing up, and whether she thinks society has changed at all in its attitudes.

Keith
March 14, 2006 11:13 PM

I totally agree with her... I was born with Spina Bifida. I frequently hear talk about the benefits of pregnant woman taking folic acid to decrease their chances of having a child with Spina Bifida. While I DO think that propper nutrician is important, I personally worry about the possibility of too strong of a vitamin dose causing some other disability. Will this happen? I don't know - but at the same time I do think that a potential risk is there if we react with too strong of a measure.

I also frequently hear about the fetal surgery for Spina Bifida. Quite frankly, this scares me. Fetal surgery is surgery on a fetus that is often too young too survive on its own. I don't know if things have changed, but for a long time it was shown that this type of fetal surgery greatly increased the chances of premature labor. If that happens, there is a strong chance that a person could ended up "trading" one disability for another. And sure, Spina Bifida can impact many parts of life, however severe premature labor can affect a child so much more. Plus there is the fact that the surgery is done at such a young age that you can't tell how the Spina Bifida would have affected a particular child. And because of this, it is hard to know if the surgery actually helped that child. Sure there are averages and correlations/conclusions that can be drawn up, but that is a far cry from a direct verifyable fact IMO. To me its not worth the risks.

Andrea Harris
March 15, 2006 09:26 AM

I think that it is important for medicine to keep striving to find cures for ALL diseases and disabilities, but not for the traditionally accepted reason. Rather than a desire to see ALL disability cured, I have a desire to see all PEOPLE with disabilities have the opportunity to be cured. I myself would probably not accept a cure for my disability were one to be offered, because I believe it has played a large part in making me who I am, and I am proud of that, but that is no reason why someone else in my situation should not be given that some opportunity; not everyone has my disability or has the acceptance of it that I am fortunate enough to be raised to have. The very IDEA of eugenics* makes me sick, and thinking about the Holocaust* scares me because I surely would have died for several reasons. I do not condone eugenics, but I certainly support legitimate medical research. In short, every DISEASE or DISABILITY needs a cure, but not every PERSON with these diseases or disabilities needs a cure.

*hyperlink added by USHMM editors

Jill S
March 15, 2006 07:24 PM

So how do you define "disability"?* Or I guess the logical followup question is whether it is "disability" that is the problem, or is it society's attitude toward whatever is labeled as a disability or whoever is considered a person with a disability?

*hyperlink added by USHMM editors

Emily
March 15, 2006 10:54 PM

[Quote] every DISEASE or DISABILITY needs a cure, but not every PERSON with these diseases or disabilities needs a cure. [Quote]
I totally agree with Ms. Harris. I have ROP (Retinapthay of Prematurity) and so I am legally blind. Being visually impaired is a part of who I am, and I"m not sure if I would still be 'me' if I could somehow see "normally". But I do think it would be nice to have the option.

Emily

Erin
March 15, 2006 11:45 PM

My personal belief is that people are individuals...every single person on this earth born and unborn(fetus) have the right to live...with or without a disability. If there is a medicine out there that will make someone's life more liveable with less pain then it should be up to the individual whether or not they want it. Some people like to think their illness or disability is what defines them, it makes them who they are. Myself who has been diagnosed with an illness that during the era of the Third Reich* and Final Solution* would surely of been sent to a death camp. But does my illlness make me any less of a person, no it doesn't. Sure I have problems and issues and there is no cure for me. Back in those days therapy would never of been considered which now is my saviour, it won't cure me but it gives me the tools to deal with my own demons. I don't think any one person can decide who deserves a cure but I know that I wouldn't be the person I am today and value my life if I had led a mundane existence free of any complications. It has brought alot of beautiful souls into my world. Everyone person deserves to exist and has that right....who are we to take it away for the "better of society". Wouldn't that make us just as guilty as wanting "racial purity".*

*hyperlink added by USHMM editors

Harold A. Maio
March 16, 2006 05:18 AM

Disability is a political construct, imagine being politically defined by what one cannot do. IT is precisely what politics did to women, to Americans of African descent: on the basis of a single aspect of being, disability was imposed, and acted upon. Women were **inferior**, people of African descent were **inferior**, and denied access to the full freedoms of democracy.
Referencing any individual or group by dis-ability, now defined not by gender or skin tone, but by some medical or physical descriptor ignores the very definition of equality.

Harold A. Maio
March 16, 2006 05:40 AM

Arthur Caplan: I am offended you employ the term "euthanasia" in your talk offered online.* It is Nazi Deutsch. When the vernacular of one group invades the vernacular of another, and controls it, ethics loses. It is interesting to me which metaphors cross from one group to another. Eric Rudolph bombed "abortion " clinics, his political agenda saw them in precisely that narrow term. Journalists ( and the US Supreme Court!) adopted his word, validating it, imposing it upon the public mind and. In that respect he achieved a level of success: We did not witness the bombing of the New Woman All Women Clinic, fact, but the political agenda of Rudolph mirrored in the press, an "abortion" clinic. You and the Holocaust museum impose Hitler's term * upon discussion. How crude and irresponsible. One cannot argue however it is unethical. When language appears as "automatic," mirrored, writing, thought is not involved.

* hyperlink added by USHMM editors

U.S. Holocaust Memorial Museum Editors
March 16, 2006 03:42 PM

Jill S. and Harold Maio raise the issue of "what is a disability" and highlight the power that language has to shape individual and societal attitudes toward people with disabilities. We invite others who are interested in discussing this topic to see what Harriet McBryde Johnson has to say about the question of language, and contribute to the related discussion thread.

Harriet
March 17, 2006 11:59 AM

Keith makes a good point that in the real world cures are rarely magic bullets -- they bring various costs to the individual. If we put that reality aside, it sounds very plausible to say, as several have here, that scientists should find cures and then individuals can decide whether or not to accept them. But I wonder if that is unrealistic. In a deeply ableist society that values a certain kind of independence, what happens if we turn down cures? How would I justify "being who I am" -- which includes getting lots of help from a lot of people -- if a cure would enable me to "do it myself." I think I'd have to take the cure, despite my near certainty that I'd be surrendering my happiness. So on a selfish level, I hope they don't find a cure for me! And on a social level, I think the cure industry is based on a false idea that everything can be fixed, when the reality is that our bodies and minds are made of materials that fall apart. By denying that reality, we suck up energy and resources that could go toward building good lives and justice. Other people disagree, and I don't oppose research by any means. It will happen. And I think there might be some rational process to set priorities. My vote would go for curing addiction in all of its forms -- something that's not likely to tug heartstrings on a telethon.* We need to understand that what may be immediately appealing (e.g., making crippled children "normal") may not be so beneficial as it seems.

* hyperlink added by USHMM editors

Kim
March 22, 2006 08:44 AM

The problem with a lot of "cures," is that in many cases disabled people will not have a choice. Also, many disabled people, especially children whose parents consent for them and adults convinced (wrongly) that their only hope of avoiding a horrible fate such as institutionalization* is cure, will suffer and die needlessly as guinea pigs in the search for a cure. Many things proclaimed to be cures will in fact not be cures and will also harm people to whom they are given. And for many of us, the main "cure" the research is going to be able to find is eugenic selective abortion. Meanwhile millions of dollars are diverted to research and none to living our lives. I am, among other things, an autistic woman. (I have a website called Getting the Truth Out, for anyone who wants substantial details of what that entails for me. I warn you however that you have to read the whole thing to get the point.) In my case, "my disability" is in part a deep difference in brain organization. To cure "my disability" would actually take away the kinds of thinking I do best, this even being documented in the research as to what autism really is. (Autistic cognition is what is usually known as perceptual, and we have access to that kind of cognition that non-autistic people do not have because their own cognitive strengths obscure our kind of perception.) It would mean rearranging everything that makes me who I am at an even more fundamental level in some ways than the way the rest of my body works. Why would anyone want that unless our kind of person were so disadvantaged that it was often offered to us as our only hope of a good life ?* Someone else says that all disabilities need cures even if all people with them don't. This assumes that the definition of disability as medical is real, fixed, neutral, and objective. Many autistic people are well aware of the fact that our brains can do things that the typical brain cannot (and vice versa), and yet by sheer numbers the typical brain is not considered disabled and ours is. I am not saying this to elevate us over anyone else, but to point out that what counts as a medical condition really is constructed by the values of the people deciding what's medical and what isn't. The inability to perceive many aspects of what is right in front of you, even if you're trying to, is considered a simple medical fact, when in fact autistic people are much more able to do that than non-autistic people. It's not considered a "disability," no matter how much harm it causes, because everyone has it. Social supports are already in place to ensure it doesn't endanger everyone, including, I believe, the presence of autistic people in the world. If the non-autistic world eradicates our "disability" without understanding its use to them, they make the world more dangerous to themselves without even noticing. Part of our role is to perceive things they can't. And they can do things that we can't, that we need done for us too, that rely on not being able to perceive as many things as we do (which allows them, for instance, to make rapid decisions more readily and to do things that to us would mean intolerable levels of multitasking). If this blatant example of bias in what constitutes "a medical condition" is part of what happens to autistic people, then how can anyone be sure about other "medical disabilities"? Why does something's designation as medical mean it automatically needs a cure? It's my belief that disability adds needed diversity in the world, that without it, humanity is far worse off as a whole. What I always wonder in people's rush to eradicate* us is what makes them so sure they know what they're doing, what makes them so sure that we want to be different or even should be different than we were already made, and why do they often throw millions of dollars into fixing us but can't spare us anything when we really need it to survive? Why do they think they're so much better than we are that doing this to us is considered an improvement?

*hyperlink added by USHMM editors

JOEY
April 02, 2006 10:18 AM

the patient

Elizabeth Kirkley Best
April 06, 2006 01:00 AM

The question is the most troubling in human society. We keep trying to ascribe it to an academic ethics discourse, but the question becomes a theological one first. The natural and popular view, and the easiest stance is that every deviation from the norm requires correcting. It seems on the surface merciful to 'fix what's wrong'. Innate in that view though is a utilitarian expectation that only what is like everything else profits society and the human condition. Atheistic and Agnostic positions fall easily into that snare in a facil logic. Today, though, even theological perspectives fall to the same expediency: the implicit view that with every aberration and difference erase, human society and condition will be perfect.

Theological views, though from diverse corners such as orthodox and fundamental Christianity, Orthodox Judaism and others understand life and life value in a complex matrix of God's Sovereign design. In this design, there is no 'life without value'- each life, even those seemingly in pain, "deformed' [whatever that means] or without consciousness or other functionality play an intricate role in the tapestry of God's love and meaning. The stillborn child, the person deemed 'PVS' or the schizophrenic all touch and form other lives of greater 'function'. Life has to become and remain the premiere value. This is not to say that there are extremities of decision which we all beg not to have to make.

To the point: because of this dichotomy of perspective, who and what needs a cure can never be fully settled in a diverse society such as ours. Ethics committees are often plagued with the fundamental obscurity, never addressed of how many members have a utilitarian view and how may have a 'sovereignty of God' or 'life value' view- these views are not repaired by adding religious persons and scientific persons for the two views cross lines.
'Life-Value' views almost never have lead to dysfunctional cultures or nations: utilitarian views in which lives are valued according to useful purpose or degree of 'enjoyment' of 'normalcy' are present in everything to the Third Reich and racial science/social darwinism all the way to hedonism.
Those cultures often degenerate into suffering and debauchery.

Marie Ranier Rilke once noted that he was afraid if his demons left his angels would leave too. Definitions of 'cures' are best left first to the individual and only secondly to society. If representatives of society are selected to decide, one has only to hope they hold 'life-value' views. I am afraid though that utterly we get the mix which leads to division and the furthering of suffering.

Scott R
July 18, 2006 02:27 PM

I agree that the issue is first and foremost a theological one. We don't have to look very far to witness the impact that cold utilitarian logic can have upon people with disabilities. From the Nazi's to leading bioethecists of today such as Peter Singer, their utilitarian logic came to the conclusion that people with disabilities shouldn't exist at all. From this basis we see a growing trend not toward curing disability but eliminating it pre and post birth via abortion, infanticide, mercy killing and legalization of euthanasia. Things have already gone so far that "wrongful birth suits" are being successful with the courts of the US and Canada. I fear that we are fast moving in the same direction as the Nazi's but have merely dispersed the killing and surrounded it with a host of language detoxifications to hide what is really occurring. Specific to developmental disabilities, several studies have indicated 80% are already electing to abort children with Downs Syndrome and those who murder adults with developmental disabilities are receiving vastly reduced sentences or not being prosecuted at all.

God makes no mistakes about who he places on this earth. Everyone has an impact and a purpose. The cure for disability increasingly seems to be equated with extermination. I hate to think of a world void of people with disabilities; a world which rather than offering compassion and opportunities to people with disabilities to contribute their talents for the betterment of all, instead places selfishness, convenience and economic considerations to the forefront in deciding matters of life and death. Instead of valuing people with disabilities as God's creations they are being redefined as less than human and worthy of only contempt.

Penny
July 28, 2006 12:13 AM

Interestingly enough, I just got back from a play, The Jellybean Conspiracy, performed by a local high school. The question of "curing" a sibbling with Down Syndrome was a major part of the plot. The starring role was performed by a senior with Down Syndrome, who received a standing ovation. During the play's dialogue, the classroom teacher explained how the nature of chromosomes in DNA, throughout every cell in the body, made a "transplant-type" cure impossible and the resulting drama related to the question of the relevancy of a cure at all.

Connie
November 09, 2006 01:27 PM

Who should decide what needs a cure? I think as research progresses and if a cure is found, then it is up to that individual to accept that cure or choose to keep that part of them that is "the disability." Me? I have held my daughter in my arms as she died of Cystic Fibrosis. Do I want a cure for this disease? Of course! She was a month from being eleven years old when she died. She wasn't finished with her dreams. I know that because we talked of it often. As she awaited a lung transplant (which is not a cure) we knew another human being would have to die in order for her to live. That bothered both of us. My son is twenty-one and has the same disease. He too will face death sooner than those of us who can travel this life free of disease. Does he want a cure? Yes! The decision to accept a cure should it become available would have to be made individually, not distributed by criteria made by those who are not in the position of the person with the disability. Just my thoughts, I love my children and thought I would die before them.

Courtney
February 28, 2007 08:22 PM

Not one person on this Earth should decide what is best for another man or woman. Cures are made for diseases and illnesses. We cannot cure humanity, we cannot perfect people.
In my mind Adolf Hitler was not a great man, and he should not have held such prejudices against Jews and other ethnic groups. Either we have blond or brown hair, blue or green or brown eyes, we are still in fact people. We should be treated equallly with respect.
In conclusion, I want to say that no person should decide what needs a cure.

Fiona
June 18, 2007 03:21 PM

The main reason for why we seem to feel the need for cures is to end suffering. The problem with that is that suffering will never end. I swear upon it, and if you wouldn't you need to take a look out into the huge, open world. Sure, we should look into cures for diseases that effect the most people in the most profound and most horrible way, but to add a few years onto one's life--is it truly worth the billions of dollars anyways? We are all going to die -- that is inevitable.

Yes, I am a young, confused teenager. :)

Dillon M.
October 31, 2007 12:46 AM

I think that it is up to the person with the disablement to decide if he/she wants a cure ,and that although I see a disease, ailment, or disablement as a bad thing that would prevent me from many things, perhaps there are reasons unknown to me that are good reasons to have the disablement. Whether or not the person wants the cure, the decision is theirs to make, and I would respect their decision, unless it is a person close to me that wants to not take the cure, but suffer from the effects, but then again , if they are happy, perhaps it does not matter what I think.

SUBMIT NEW MESSAGES