Hope you enjoyed today’s talk!
Prof. Craig Garner talked about the recent work that his lab is doing on neurobiological approaches to treating Down syndrome. The talk itself consisted largely of the science behind his work, and then we proceeded to explore some related ethical issues in the ensuing discussion.
Of course, our discussion here should focus on ethics, but I just want to make a quick side-comment. I personally appreciated how excited Prof. Garner was about the science– about neurotransmitters, inhibition/excitation, synapses, etc– because it really made things easier for me to follow him. This is often said about a lot of people, but I really thought that his enthusiasm was contagious. I found myself wanting to better understand the science behind Down syndrome. I hope you guys felt the same way!
But of course I was also thinking about the ethical issues involved here. Again, feel free to discuss any moral issue that you found relevant– but I would especially be interested in hearing your thoughts about informed consent in cases where, like here, others are making decisions for the patients. (The concept of informed consent is a quite developed one in bioethics, and you can read a very comprehensive review of the literature here. For something more fun and accessible, listen to Onora O’Neill on medical consent.)
In class, we discussed the possibility that some people with Down syndrome might have sufficient cognitive capacity to give informed consent. But what about the other cases when the patient clearly cannot grasp information to be able to consent in a meaningful way? In those cases, we usually have relatives give consent on behalf of the patients. I’m wondering what ethical complications there might be in such cases.
I think the worry becomes particularly visible when the treatment leads to some change in personality. I think many of us have the intuition that we should be in control over decisions that affect our personalities– we like to think, after all, that we have the power to change our personalities when we determine to do so. And that power is important to us.
So we have a treatment that could significantly enrich the lives of patients with Down syndrome by increasing their cognitive capacities. And yet there is the worry that, in prescribing those treatments onto the patients, we are somehow breaching the patients’ autonomies.
How worried are you about that specific challenge? In general, what sorts of problems are there in making decisions for others about medical treatments?
Again, of course, feel free to comment on other relevant ethical issues as well. Looking forward to reading your thoughts!
In my opinion, the argument that a Down system patient cannot consent to treatment, therefore should not use medication, doesn’t hold water. Those with the most severe cases of Down system really have no preference whether or not they should receive treatment — this concept is incomprehensible for them. Therefore, the next possible decision-maker in line, likely the guardian, should (without moral dilemma) have the final decision whether to issue treatment or not. This is especially bolstered by the fact that the chemical treatment wears off within months, so if negative effects surface, and a person is deemed better or happier without the treatment, then the medication can be removed and the condition can return to normal.
By no means should every person with Down syndrome be issued medication if the guardian does not wish for it. Really, until the Down syndrome patient can comprehend the decision to take this medication, and can either accept or refuse it, it will not be an ‘informed’ consensual decision. Therefore, the choice should be handed to the guardian/person in charge of the individual to make.
Making potentially life-altering decisions for other is a huge grey area, but I think Dr. Garner elucidated some key issues in his talk. The word ‘autonomy’ has been thrown around a lot, but I think one has to consider how much autonomy a person with Down syndrome has. Of course there is a huge range in cognitive impairment due to Down syndrome, but I distinctly remember Dr. Garner talking about patients he had worked with who are effectively incapable of doing anything for themselves or actively engaging in society and the world around them. These patients wouldn’t be able to choose what color shirt to wear let alone weigh the decision to go on medication or not.
The way that Dr. Garner described the drug, it is not personality-changing so much as it merely lifts some of the inhibition going on in the neurons (I’m paraphrasing here since I didn’t quite follow the mechanisms he talked about). So it’s more like lifting a roadblock in the thought process caused by the disease. From this perspective, maybe the drug would just allow the patient to be the person they are underneath the inhibiting feedback loops. I guess what I’m getting at here is that I’m not entirely convinced that “personality-changing” is an accurate description for what the drug could do for the patient. If it could help low-functioning patients attain some level of independence and awareness, I think that guardians should, without experiencing too much conflict, be able to get the medication for their dependents.
This might be a huge stretch (and a terrible analogy, who knows), but if you take a normal functioning person (e.g. a college student) and put him on something that causes inhibition in the brain (e.g. alcohol), would you consider his subsequent behavior to be significantly altered?
In other words, what are we considering to be a personality change?
Dr. Garner talked about that current treatment is able to extend lives of Down’s Syndrome patients for decades. We didn’t get to talk about it but I’m curious to know what people think about the quality vs. quantity of life, and at what expense. Needless to say, treating patients to prolong life is one of the fundamental theories of medicine, and in some sense the ultimate goal. But if the patient is so cognitively impaired that he or she is not able to comprehend life or is middle to high functioning to the point that he/she is able to feel the alienation from society but not able to change the situation, is prolonging life necessarily a good thing? In addition, no current treatment is able to completely cure mental illness, and if treating a patient with any mental illness only elucidates the world slightly up to the point that the patient is cognizant of his/her differences, treatment may only lead to frustration. Personally, I believe that it is always necessary to treat patients because of while no treatment guarantees no improvement, treatment lends the opportunity for betterment and maybe even cure. But one may also argue that this is not fair to the patient’s friends and family who take care of them and not fair for society to carry the burden if the patient will never be able to be self sustainable. In last week’s talk, we discussed the opportunity cost of death penalty – the same idea may also apply to treating a patient with very small chance of cure. One may argue that resources might be more efficiently allocated to treating diseases with efficient and cheap treatments (i.e. oral rehydration therapy that costs a few cents each packet but could save millions of lives due to diarrhea, the number global cause of death). I don’t agree with this argument personally but I can also understand this point, and my views are largely a gut-feeling. I’m curious to see what you all think!
I am also interested in the conflict between quality vs quantity of life and also, the role that families or guardians play in determining that conflict. I would like to compare the situation with elderly patients who may be dying of natural causes but whose families try to preserve their lives by having them go through rigorous medical treatment operations, only to see those plans fail and their loved ones suffer for extended periods of time. The question is, is the treatment worth it? Would one rather live x healthy years and “move on” or be forced fight for an additional amount of years, during which his/her life is spent mostly in the hospital or just away from their family and other everyday activities? Some would argue yes, that additional amount of life is worth fighting for, perhaps even at the cost of some quality of life.
In the case of patients with down syndrome, families also want their loved ones to be treated because they believe treatment is worthwhile, but unlike treatment for the elderly, the end goal is about improving the quality of life. The family hopes that their children will develop better cognitive skills and become more engaged with society. But again, at what cost? Whatever incremental gains are made may yet be lost as soon as treatment stops. This will not only cause a lot of stress to the family but also to the patients. It is a fragile situation and I can only wonder how families deal with this fact.
I think that the families are often unaware that they are setting themselves up for failure. I do not mean to say that no treatment should ever be given in either case, but that families may often fail to understand the consequences of their actions on their loved ones, themselves, and the rest of society.
I, too, was interested in Dr. Garner’s explication of personality change spurred on by the drug at hand; however, my opinion on what he, Dr. Garner, asserted was slightly different. First and foremost, I disagree with you in respect to how Dr. Garner described the drug. With any medication directly affecting a neurotransmitter, a feeling of personality change is a major side-effect. As the medication has not made it to human clinical trials, Dr. Garner seemed to only suppose that personality change might be a major side-effect of the drug, as he had no real data (yet) to substantiate his claim. What I’m trying to get at is that it is very possible in that affecting GABA A receptors on neurons, a personality change can occur, and by personality change, I mean a change in a person’s characteristic thoughts, feelings, motivations, and behaviors. Although I disagree with you in that respect, I believe that a personality change is not necessarily a bad thing in this case, and when a person with down-syndrome does not have the cognitive function to realize his or her personality has changed, should it even be a topic to broach?
Responding to your analogy, I don’t think alcohol and this medication are comparable, unless alcohol is consumed on a consistent basis (alike intake of medication), which we then would refer to as alcoholism. It’s clear that intoxication causes drastic change in how a person thinks, feels, and behaves. Suppose a person does become an alcoholic, the drastic change in how a person thinks, feels, and behaves has now become consistent enough to refer to as a change in personality.
Just a couple of weeks ago I was talking to a friend and somehow the topic of abortion came up. I asked her if when she is pregnant and finds out that the child she is carrying has Down’s syndrome, would she choose to have an abortion? Without hesitation, she replied that she would, echoing my own feelings regarding an abortion situation in this situation. I understand that other people, depending on their own personal ethical code, may not feel the same way, so I would like to just outline briefly the thought process that goes along with this decision according to my own personal ethics. I was taught that there are three decision dimensions to ethics: prudential, legal, and ethical. The prudential bucket refers to what is in your best interest, the legal bucket refers to what is lawful, and the ethical bucket refers to what is right.
When talking about abortion in the United State, the lawfulness of the decision to abort is easy; since Roe v. Wade in 1973, abortion has been legal. In the prudential bucket, I would look at what is in my best interest. Would I be able to provide support for my child throughout the remainder of my life and then make suitable arrangements for his/her care for after my death? I probably could, but is that really in my best interest? I would argue that for my own personal situation, it would not be. This is because I plan on pursuing a time-demanding career and spend time living abroad in non-English speaking countries. These life decisions would not be compatible with raising a child with Down’s syndrome, and if I chose to keep the baby, then my career choice and residence location decisions would have to change, something I am not willing to do. The ethical bucket is a bit trickier, but I take the stance that given my future goals, aborting a Down’s syndrome baby would be ethical given that I would not have the time and stability to give my child the most nourishing environment that a child in that position would need.
I think it is amazing that pharmacotherapies for cognitive impairment in Down syndrome are emerging. Dr. Garner’s enthusiasm was contagious; I have not stopped reading on the subject!
The abnormalities existent in the Down syndrome brain were really fascinating. If Dr. Garner ‘watered down’ the technical/scientific explanations I am glad because I found his explanations to be shockingly understandable. Down’s children suffer a progressive cognitive decline, an unavoidable symptom… until recently. The ‘revolution in the neurosciences’ of the last decade or so (last 12 months specifically!) have led for once thought untreatable neurological disorders such as Down syndrome to be treated with pharmacotherapy.
Dr. Garner said PTZ-fed mice achieved great task scores (object memorization/overnight memory) compared to wild-type (normal) mice. From Wikipedia: “these improvements persisted at least 1 to 2 months after the treatment regiment.”
If a Down’s syndrome persons take PTZ, their personality may change, but what definitely will change is their object based task scores. This is very cool. However, it bothers me that the improvements fade after treatment stops. There seems present an ethical question we must ask: should Down syndrome persons rely on a drug (a stimulant, more specifically) that they need to persistently take in order to be at the maximum cognitive level these persons have ever exhibited? This reminds me of the recent film Limitless. Will the individuals with Down syndrome remember the increased mental capacity they once held if they start and then stop taking Pentylenetetrazol?
Some interesting points have been brought up, and I am very happy that everyone is so engaged in these discussions.
The informed consent issue is important to these kinds of cases. I’m not convinced, however, that the guardian’s wishes are necessarily interesting in this debate. What if the drug therapy was perfect? I think it would be completely immoral if a guardian chose not to give the perfect therapy to their children. In fact, I would go so far as to consider it a form of child abuse. From a logical standpoint, forgoing the advantages of a normal and happy life is the same thing as taking them away in the first place, which is clearly immoral.
I am completely riveted by the discussion of aborting children with Down Syndrome. It’s not clear that we should have the power to selectively pick the type of children we have. Of course it is easier to defend aborting fetuses with the worst cases of Down Syndrome in which the children are basically out of touch with reality. The interesting case to me is if we could predict the borderline cases. The IQ range of children with Down Syndrome could be anywhere from 0-80. If it’s okay to abort a child with a future maximum IQ of 60, why not 80? 100? I am uncomfortable with the notion that how deserving or likely we are to come into the world is a function of what is convenient or desirable in society at a given point in time.
Perhaps this is an unfair or cheap analogy, but what if scientists isolated a gay gene and could predict whether a fetus would be gay? And let’s say scientists use this technology to tell an expectant mother that her child has a high probability of being gay. Let’s also say that the mother is from the South or Sudan or something where being gay could be very difficult. I don’t think it’s ethical to choose to abort the child because one of his traits would be non-optimal in the area of residence of the parents. Is selectively breeding or deciding to birth certain sorts of children, in other words, compatible with diversity?
I think Tevin has made some good points and I’d like to expand on them.
I would argue that if it can be demonstrated that the drug will improve the mental capacity of a downsyndrome patient, the wishes of the guardian are at that point not very relevant. It seems clear, as was said above, that “forgoing the advantages of a normal and happy life is the same thing as taking them away in the first place, which is clearly immoral.” The most stringent protection of parental rights would still not allow a parent to withhold nourishment or adequate education from the child. The state has both the right and the obligation to override a parent’s decision when the liberty of the child is at stake. A person cured of downsyndrome is unquestionably much freer to both pursue their own goals and realize their full human potential. The fact that the cured person may develop a different personality is perhaps interesting but certainly not a reason to not administer the drug. The parents’ right to be comfortable with their child’s ‘consistent’ personality is vastly trumped by the individuals right to be more free and live a fuller life.
This issue of abortion is quite tricky to say the least. To start with, I’m not sure the analogy of aborting gay children in Sudan is accurate. Children growing up with downsyndrome are going to endure constant medical problems in ways that gay children will not; there are no drugs you have to take to mitigate the harms of “being gay”. Most importantly, as a gay person, you are still (theoretically, at least) able to grow your mind and realize your human potential in ways that a downsyndrome person cannot. Now, these are reasons to distinguish the two cases, but it does not say whether aborting one or the other (or both) is justified. I think it comes down to your position on abortion itself. If you believe that abortion is a woman’s choice, then presumably the reasons for that choice don’t matter – that is, they are not relevant to question of whether this abortion is justified. Women in general are not required to give reasons as to why they want an abortion. We may, as third parties, view some reasons as intuitively better reasons than others, e.g. to save the life of the mother vs. the baby will have downsyndrome. But I don’t really see how aborting a child because it will have downsyndrome is any worse than aborting it because you forgot (or couldn’t be bothered) to use birth control. Abortion is a very difficult issue because of the sentiment involved, but we must remember to always fall back on reason. I tend to think that when we reach a case which is unclear, we should simply defer to the woman’s choice. Women have been oppressed throughout history, and one of the primary ways that has happened is through men trying to control the reproductive sphere. As a consequence, we ought be deeply suspicious of any arguments which imply that a woman’s right to retain autonomy over her body will be violated.
I cannot agree with you more. Empowering women is one of the clearest and most effective ways of improving people’s lives.
I do NOT wish to say that homosexuality is like a mental disease. I was just illustrating what I view as a moral dilemma in choosing to gestate certain kinds of children. What I was trying to refer to was the broader ethical complications of the ability to selectively have children with certain traits (not necessarily intelligence or down syndrome status, however). I am saying that it is easy to imagine a world in this scenario that lacks variety and unconditional love (because traits that may be difficult to have would be suppressed). I am worried about where these sorts of decisions can lead in the long run.
I understand that changing a patient’s personality without their express consent could be seen as a breach of their autonomy, built I don’t think that the logic really applies to the situation of treating Down syndrome. If, say, we were dealing with a drug that is guaranteed to bring someone out of a coma, but in order to do so it will significantly change their personality. Here, there would be questions, because the patient had a chance of continuing to be themselves and eventually getting healthy. So, they may have wished to take that chance rather than the guarantee of the drug. Yet Down syndrome seems completely different. The patient, in their original state, is not even aware of themselves or their personalities, especially in the more extreme cases. If they are aware, they probably have the capacity to decide for themselves whether they want to the drug or not. So, the patient does not have a “personality” to lose. What the drug gives them is the chance to acquire knowledge, and through that process create a personality that they are aware of. I am still not sure the how effective the treatment is, but it seemed like it could at least get patients to the point where they could decide if they wanted to continue or discontinue the treatment, in which case there doesn’t seem to be any harm in making the choice to try the drug for the patient because it can ultimately be up to them whether or not they continue. It didn’t seem like any of the side effects were permanent, so a trial of the drug seems perfectly reasonable.
The only ethical issue I thought was a legitimate challenge to the drug was if it was discovered that it significantly decrease life expectancy in patients. The question of whether 10 more years, say, of untreated Down Syndrome is better than not having those years but being able to acquire significantly more knowledge during that time. In this instance, informed consent becomes more of an issue as well because know someone is making a decision for the patient about which is better between a longer life at one level of intelligence versus a shorter life at a higher level, which is a much more abstract and difficult question to answer for someone else. Yet, we don’t even know if this is the case with this treatment, so it is quite possible that this issue isn’t even worth considering.
I found it really interesting to hear Craig Garner speak on this topic because it was actually the second time last week I had heard him speak. I’m also enrolled in “Diverse Perspectives on Disabilities” which meets on Monday nights, and on the 9th I had gotten to hear him talk about the drug he developed in class, and then on the 13th got to see a similar presentation, but from a different perspective. One of the fears voiced in my Monday night class was that such a drug could be abused by people looking to raise their intelligence, and I know this was addressed again on Friday. Once that fear had been quelled, people seemed more open to it. Again, another question that aroused in both classes was the issue of personality change. While I think this is a valid concern, I think there is a bigger picture involved here. I have a friend who is depressed and takes medication. Does this affect her personality? Yes- but it does change her in a more positive light (whether or not you are a proponent of anti-depressants, they do lift a burden from the patient.) I think that when there is a chemical imbalance that can be addressed, and it is done so in a safe manner with a small dosage with a huge safety window like this drug, then it is worth a try. If it is found to shorten lifespan by ten years, then I think that’s something we need to look at more carefully. Obviously we would want to say the individual should be able to chose, but for those patients who are not at the high-functioning end of the DS-spectrum, this isn’t exactly a reality. The question is then shifted to the guardians, but this is a hard question for a parent with no easy answers.
I am fascinated with the idea of community that was brought up during the discussion and what would happen to that community if people with Down syndrome started taking what could be deemed as “identity-changing” drugs. Obviously the aim of these drugs would be to increase their cognitive abilities and help them function better in society. But would they identify less with their peers? How does that middle ground between abnormal and normal affect them psychologically? Along with these questions arise more questions of how researchers can evaluate patients over time. Obviously a longitudinal study would be costly but maybe in the long run can be helpful in providing guardians and patients with the most informed information about their situation as well as what would happen if these drugs were taken.
Another thing I want to bring up that wasn’t mentioned during the discussion is the portrayal of Down syndrome on television. ABC Family released a show a few years ago called the Secret Life of the American Teenager where one of the main characters has a sibling with Down syndrome. While he lives at home with his family, he has a job, a girlfriend with Down syndrome, and even tried to raise a family (with another girlfriend who had kids). Television becomes an important venue to educate the public about this congenital disorder. The show points out that while he can form relationships and hold a job, he still rides the bus to work and can’t fully support himself. In this case, the Down syndrome does not appear to be too severe but I wondered what considerations went into including this character and what ethical questions were asked when creating a personality and role for this character.
On the topic of ABC Family, they just released a show called Switched at Birth where one of the main characters is deaf. She presents her dilemma along the same lines of the community issue of where exactly she belongs. Her best friend only signs but she has a hearing aid and can talk. In one episode she explores her identity as a mix of the two worlds, but not entirely both feet into one. Maybe that is what would happen as medicine improves and doctors find better ways to help those with Down syndrome. And maybe being in that mix of two worlds is not too bad.
This was a very interesting topic. I found myself entranced in Dr. Garner’s excitement and enthusiasm on this topic.
I agree with some of the comments above. Does the drug really change an individuals personality. It sounded as if the drug enhances cognitive ability. So would it then merely enhance the individuals personality as well. That with the uncovering of cognitive ability that has been hidden, would it uncover a personality that has also been hidden. In my opinion the use of such a drug is not unethical as long as it is used responsibly and for the right purposes, for those with down syndrome.
When there is something that will increase the quality of life for an individual, shouldn’t we use it. But I found myself questioning who decides what a quality life is.
For someone who has downe syndrome, do they know what a quality life is, can they decide for themselves? Or does someone else determine that, their guardian?
I think that it is the responsibility of the guardian to make the decision. An individual with down syndrome may not be able to comprehend the scope of what the drug has to offer and how it could benefit them.