I strongly agree with this comment. I think it’s important to have a theory of mind of why people think like this. As a non-bioethicist, my impression is a lot of if has to do with the history of the field of bioethics itself, which emerged in response to the horrid abuses in medical research. One major overarching goal that is imbued in bioethics training, research, and writing is prevention of medical abuse, which leads to small-c conservative views that tend to favor, wherever possible, protection of human subjects/patients and an aversion to calculations that sound like they might single out the groups that historically bore the brunt of such abuse.
Like, we’ve all heard of the Tuskegee Syphilis Experiment, but there were a lot more really awful things done in the last century, which have lasting effects to this day. At 1Day, we’re working on trying to bring about safe, efficient human challenge studies to realize a hepatitis C vaccine. We’ve made great progress and it looks like they will begin within the next year! But the last time people did viral hepatitis human challenge studies, they did them on mentally disabled children! Just heinously evil. So I will not be surprised if some on the ethics boards when they review the proposed studies are quite skeptical at first! (Note: this doesn’t mean that the current IRB system is optimal, or even anywhere near so; I view it sort of like zoning and building codes: good in theory — I don’t want toxic waste dumps built near elementary schools — but the devil is in the details and how protections are operationalized.)
All of which is to say: like others here, I very strongly disagree with many prevalent views in bioethics. But as I’ve interacted more and more with this field as an outsider, my opinions have evolved from “wow, bioethics/research ethics is populated exclusively with morons” to “this is mostly a bunch of reasonable people whose frame of references are very different”. The latter view allows me to engage more productively to try to change some of the more problematic/wrongheaded views when it comes up in my work and has let me learn a lot, too!
At 1Day, we’re working on trying to bring about safe, efficient human challenge studies to realize a hepatitis C vaccine. We’ve made great progress and it looks like they will begin within the next year! But the last time people did viral hepatitis human challenge studies, they did them on mentally disabled children! Just heinously evil.
Based on the article you linked, it sounds like the parents of the disabled children consented to the challenge trial, and they received something valuable in return (access to a facility they wouldn’t otherwise have access to). Is your objection to the use of disabled children in studies at all, or to the payment?
(The article also makes it seem like the conditions in the facility were poor, but that seems basically unrelated to the trial).
Yes, the studies should not have used disabled children at all, because disabled children cannot meaningfully provide consent and were not absolutely necessary to achieve the studies’ aims. They were simply the easiest targets: they could not understand what was being done to them and their parents were coercible through misleading information and promises of better care, which should have been provided regardless. (More generally, I do not believe proxy consent from guardians is acceptable for any research that involves deliberate harm and no prospect of net benefit to children.)
The conditions of the facility are also materially relevant. If it were true that children inevitably would contract hepatitis, then a human challenge would not be truly necessary. More importantly, though, I am comfortable calling Krugman’s behavior evil because he spent 15 years running experiments at an institution that was managed with heinously little regard for its residents and evidently did not feel compelled to raise the issue with the public or authorities. Rather, he saw the immense suffering and neglect as perhaps unfortunate, but ultimately convenient leverage to acquire test subjects.
Huh, I thought that most of the disagreement between people around these parts and bioethicists is in the direction of people around here being more pro-freedoms of human subjects/patients. (Freedoms aren’t exactly the same as protections, but I interpret small-c conservative as being more about freedoms.)
Examples:
Right to sell my organs
Right to select my kids on the basis of non-medical features
Right to access unapproved treatments
Right to die if I am of sound mind and wish to do so
Right to sign up for arbitrary medical trials/studies, including being compensated and including potentially dangerous medical trials/studies. (Subject to sound mind constraints and maybe extortion constraints.)
Generally, I personally think that much more freedom in medicine would be better.
(In fact, totally free-for-all would plausibly be better than status quo I think though I’m pretty uncertain.)
I agree that there is a disagreement around how utilitarian the medical system should be vs some more fairness based principle.
However, if you go fully in the direction of individual liberties, government involvement in the medical system doesn’t matter much. E.g., in a simple system like:
Redistribute wealth as desired
People can buy whatever health care they want and sign up for whatever clinical trials they want with virtually no government regulation. (Clinical trials require actually informed consent.)
The state doesn’t need to make any tradeoffs in health care as it isn’t involved. Places like (e.g.) hospitals can do whatever they want with respect to prioritizing care and they could in principle compete etc.
(I’m not claiming that fully in the direction of individual liberties is the right move, e.g. it seems like people are often irrational about health care and hospitals often have monopolies which can cause issues.)
Sorry, that was ambiguous on my part. There’s a differentiation between research ethics issues (how trials are run, etc.) and clinical ethics (medical aid in dying, accessing unapproved treatments, how to treat a patient with X complicated issue, etc.). My work focuses on the former, not the latter, so I can’t speak much to that. I meant “conservative” in the sense of hesitance to adjust existing norms or systems in research ethics oversight and, for example, a very strong default orientation towards any measures that reduce risk (or seem to reduce risk) for research participants.
I strongly agree with this comment. I think it’s important to have a theory of mind of why people think like this. As a non-bioethicist, my impression is a lot of if has to do with the history of the field of bioethics itself, which emerged in response to the horrid abuses in medical research. One major overarching goal that is imbued in bioethics training, research, and writing is prevention of medical abuse, which leads to small-c conservative views that tend to favor, wherever possible, protection of human subjects/patients and an aversion to calculations that sound like they might single out the groups that historically bore the brunt of such abuse.
Like, we’ve all heard of the Tuskegee Syphilis Experiment, but there were a lot more really awful things done in the last century, which have lasting effects to this day. At 1Day, we’re working on trying to bring about safe, efficient human challenge studies to realize a hepatitis C vaccine. We’ve made great progress and it looks like they will begin within the next year! But the last time people did viral hepatitis human challenge studies, they did them on mentally disabled children! Just heinously evil. So I will not be surprised if some on the ethics boards when they review the proposed studies are quite skeptical at first! (Note: this doesn’t mean that the current IRB system is optimal, or even anywhere near so; I view it sort of like zoning and building codes: good in theory — I don’t want toxic waste dumps built near elementary schools — but the devil is in the details and how protections are operationalized.)
All of which is to say: like others here, I very strongly disagree with many prevalent views in bioethics. But as I’ve interacted more and more with this field as an outsider, my opinions have evolved from “wow, bioethics/research ethics is populated exclusively with morons” to “this is mostly a bunch of reasonable people whose frame of references are very different”. The latter view allows me to engage more productively to try to change some of the more problematic/wrongheaded views when it comes up in my work and has let me learn a lot, too!
Based on the article you linked, it sounds like the parents of the disabled children consented to the challenge trial, and they received something valuable in return (access to a facility they wouldn’t otherwise have access to). Is your objection to the use of disabled children in studies at all, or to the payment?
(The article also makes it seem like the conditions in the facility were poor, but that seems basically unrelated to the trial).
Yes, the studies should not have used disabled children at all, because disabled children cannot meaningfully provide consent and were not absolutely necessary to achieve the studies’ aims. They were simply the easiest targets: they could not understand what was being done to them and their parents were coercible through misleading information and promises of better care, which should have been provided regardless. (More generally, I do not believe proxy consent from guardians is acceptable for any research that involves deliberate harm and no prospect of net benefit to children.)
The conditions of the facility are also materially relevant. If it were true that children inevitably would contract hepatitis, then a human challenge would not be truly necessary. More importantly, though, I am comfortable calling Krugman’s behavior evil because he spent 15 years running experiments at an institution that was managed with heinously little regard for its residents and evidently did not feel compelled to raise the issue with the public or authorities. Rather, he saw the immense suffering and neglect as perhaps unfortunate, but ultimately convenient leverage to acquire test subjects.
Huh, I thought that most of the disagreement between people around these parts and bioethicists is in the direction of people around here being more pro-freedoms of human subjects/patients. (Freedoms aren’t exactly the same as protections, but I interpret small-c conservative as being more about freedoms.)
Examples:
Right to sell my organs
Right to select my kids on the basis of non-medical features
Right to access unapproved treatments
Right to die if I am of sound mind and wish to do so
Right to sign up for arbitrary medical trials/studies, including being compensated and including potentially dangerous medical trials/studies. (Subject to sound mind constraints and maybe extortion constraints.)
Generally, I personally think that much more freedom in medicine would be better.
(In fact, totally free-for-all would plausibly be better than status quo I think though I’m pretty uncertain.)
I agree that there is a disagreement around how utilitarian the medical system should be vs some more fairness based principle.
However, if you go fully in the direction of individual liberties, government involvement in the medical system doesn’t matter much. E.g., in a simple system like:
Redistribute wealth as desired
People can buy whatever health care they want and sign up for whatever clinical trials they want with virtually no government regulation. (Clinical trials require actually informed consent.)
The state doesn’t need to make any tradeoffs in health care as it isn’t involved. Places like (e.g.) hospitals can do whatever they want with respect to prioritizing care and they could in principle compete etc.
(I’m not claiming that fully in the direction of individual liberties is the right move, e.g. it seems like people are often irrational about health care and hospitals often have monopolies which can cause issues.)
Sorry, that was ambiguous on my part. There’s a differentiation between research ethics issues (how trials are run, etc.) and clinical ethics (medical aid in dying, accessing unapproved treatments, how to treat a patient with X complicated issue, etc.). My work focuses on the former, not the latter, so I can’t speak much to that. I meant “conservative” in the sense of hesitance to adjust existing norms or systems in research ethics oversight and, for example, a very strong default orientation towards any measures that reduce risk (or seem to reduce risk) for research participants.