Many of these are rather hard to read. The following are my even-more-slimmed down summaries based on skimming just those few paragraphs. Some may be in error, if you disagree with any let me know:
1. Argues in favor of more bioenhancement and against refusing to do bioenhancement for reasons of ‘egalitarianism’, though in a somewhat wishy-washy way ‘we endorse a cautious proposal’.
2. Not really related to bioethics—argues in favor of pseudonymous publishing.
3. Argues in favor of ‘nudging’ patients to obtain consent for treatments.
4. Argues that if you favor assisted suicide when doctors do it, you should also favor it when for-profit entities do it.
5. Argues that all newborns should be screened for critical congenital heart diseases, without exemption for parental religious beliefs.
6. Tells the story of a patient who demanded his doctors do something really stupid and refused to budge. Unclear what moral, if any, they want to draw.
7. A weirdly meta paper that evaluates methods for evaluating ethics. I have no idea what this means.
8. Frets about off-label use of ketamine being worrying, recommends formal research into it combined with stricter regulation of off-label uses.
9. I have no idea what this paper is about. It tells the story of a kid called James, but I don’t know what it wants to draw from it.
10. Argues against ‘nudging’ people to register as organ donors.
11. Argues that traditional consent is inadequate for a ‘biobank’ (which stores biological samples of people?) and that you should use something called a ‘Participation Pact’ instead.
12. Argues that bioethicists should pay attention to neuroscience?
13. Agrees with someone called Lee that bioethics and environmental ethics should be linked, but disagrees that his idea of ‘public health ethics’ is a good way of doing it.
14. Asks about how to allocate limited supply of a drug called nusinersen for spinal muscular atrophy patients.
15. Argues that consent to organ donation is ‘vague’ in harmful ways.
16. Talks about ‘right-to-try’ trials where terminally ill patients try untested drugs. Some waffling, I’m unclear if they approve or not.
17. Argues that diversity in researchers will help make research better.
18. Talks about what to do if your patient’s relatives try to fix him with prayer and magic. Appears to argue that you should support the relatives as well as the patient.
19. Argues that conscientious objection to abortion should not keep you from being sued if your refusal causes injury.
20. Proposes a different standard for how to evaluate parent’s decisions re. medical care for their children. Unclear how it differs.
21. Argues that standards for resolving e.g. disagreement between doctors and family members on what to do with an incapacitated patient should be simpler.
22. Argues that all children should get measles vaccination. Claims that this paper’s conclusions ‘reframe the dialog on measles vaccination...from a framework of what is owed to parents...[to] the framework of what is owed to children’. Unclear why that wasn’t the framework we were in already.
23. References Gattaca, then argues (against some other bioethicist) that bioenhancement can be good if regulated.
24. Argues that ‘professional guinea pigs’ who participate in trials for money are being exploited by capitalism.
25. Argues that palliative care for children is currently in a very bad state, and that we should do research into it and make it better.
26. I have no idea what this paper is about. I don’t think the authors do either. (EDIT: second opinion is that I’m being uncharitable here, see Kaj below).
27. Declares that a 2010 study on premature babies called SUPPORT was unethical, arguing that it placed one of its treatment groups at higher risk than they would have been without the study.
28. Talks about how to handle decision-making for unrepresented patients. Unclear what they think you should do.
29. Argues that the HEC-C program (a healthcare certification program of some kind) is good.
30. Argues that the HEC-C program (again!) should be more diverse—what they seem to mean by this is not the standard concept of ‘diversity’ but that it should cover a more diverse set of medical situations.
31. Argues that informed consent is ‘nonsense’ because people sometimes believe multiple different things.
32. Argues (against some other bioethicists) that you do not need consent from a patient to test whether they are brain-dead.
33. Book review of a book arguing that medical ethics ‘cannot be regarded as an extension of common morality’ and must be treated as a completely different thing.
Having article-by-article summaries seems useful here. And since none of us have read most of these articles, this might be a good use case for a Google Doc, so different people can improve on summaries if they spot an error.
Some people might also prefer the Google Doc format for critiquing particular articles, and not just summarizing? Whether in the Doc or on LW, I want to encourage people to critique specific articles or arguments if something catches their eye, so we don’t stay at too high a level of generality to notice subtle errors or biases, disagreements with other LWers, etc.
_________________________
My own responses to aphyer’s summaries:
1. Argues in favor of more bioenhancement and against refusing to do bioenhancement for reasons of ‘egalitarianism’, though in a somewhat wishy-washy way ‘we endorse a cautious proposal’.
This and the other bioenhancement paper were written by Julian Savulescu, who studied under Peter Singer and co-edited a book with Nick Bostrom.
3. Argues in favor of ‘nudging’ patients to obtain consent for treatments.
Also argues that informed consent is based on “social conventions” rather than on theories of autonomy.
4. Argues that if you favor assisted suicide when doctors do it, you should also favor it when for-profit entities do it.
Treats it as obvious that commercially assisted suicide is a terrible idea; therefore physician-assisted suicide is bad too.
6. Tells the story of a patient who demanded his doctors do something really stupid and refused to budge. Unclear what moral, if any, they want to draw.
I revisited the paper itself to find the main morals it draws:
(1) Even though paternalism is theoretically a bad idea when a patient “has been judged competent to make his or her own decisions”, this example shows that there can be practical, case-by-case reasons to be unusually pushy in trying to change patients’ minds.
(2) Normally, doctors and patients are basically strangers. The “ethics consulation process” provides an opportunity to build a higher-trust relationship and/or build a mutual understanding allowing for this kind of useful paternalism.
7. A weirdly meta paper that evaluates methods for evaluating ethics. I have no idea what this means.
From a part of the paper that wasn’t excerpted: “This project was undertaken in response to a growing concern both within and outside the field of clinical ethics that CE consultants who interact with patients, families, and health care professionals need to demonstrate competency to respond effectively to ethics consultation requests (Fox 2014, Dubler et al. 2009). Responding ‘effectively’ raises the question of what constitutes ‘quality’ in ethics consultation. While there has been historic value in the field placed on preserving a diversity of approaches to ethics consultation, diversity should not preclude evaluation of quality. Clinical ethics must continue to embrace diversity of approaches while sharpening our commitment to measurement of quality.”
The proposal is to assess quality by evaluating a portfolio consisting of the candidate’s eductional background, “a written summary of the candidate’s philosophy” of clinical ethics consulation, letters of recommendation, and the “centerpiece of the portfolio”: “six in-depth, detailed case discussions in which the candidate led or co-led the ethics consulation”. Since there are a lot of open questions and disagreements in bioethics, “presentation of arguments regarding controversies was given credit as long as they were argued clearly and coherently”.
9. I have no idea what this paper is about. It tells the story of a kid called James, but I don’t know what it wants to draw from it.
A hospital has insufficient staffing over the weekends, forcing them to switch a patient to a worse therapy. The paper argues that this is ethically unacceptable, and the hospital should have foreseen this possibility and sent the patient to a better-staffed hospital at the outset.
On an unrelated side-note, the paper asks whether the “worse therapy” is actually worse, noting that there’s disagreement/ambiguity in the medical literature.
10. Argues against ‘nudging’ people to register as organ donors.
Also argues for “mandated active choice,” which “presents people with the choice of registering as an organ donor or not, and requires them to make a decision, for example, by making the renewal of their driver’s license conditional on them stating their donation preference.”
12. Argues that bioethicists should pay attention to neuroscience?
And that they should do less theoretical work, and engage more with real-world specifics and stakeholders’ views.
E.g. (from the paper itself): “since deep brain stimulation (DBS) trials for treating motor disorders such as Parkinson’s disease and other neuropsychiatric disorders began almost 25 years ago, there have been hundreds of theoretical papers about numerous possible ethical challenges (e.g., dehumanization, loss of autonomy, changes to personal identity, authenticity of affective states, how to obtain meaningful informed consent, therapeutic misconception, human enhancement). However, in 25 years of work on DBS there is a surprisingly small amount of empirical literature about the perspectives and experiences of stakeholders (e.g., patient-participants, caregivers, clinical trial or treatment decliners, clinicians, researchers) regarding these neuroethics issues and whether and how these issues are manifested.”
16. Talks about ‘right-to-try’ trials where terminally ill patients try untested drugs. Some waffling, I’m unclear if they approve or not.
The paper is opposed to right-to-try, and warns that “the use of investigational drugs may gradually turn into fantasy therapy”.
20. Proposes a different standard for how to evaluate parent’s decisions re. medical care for their children. Unclear how it differs.
The “best interest standard” says that a parental decision should be respected if “a reasonable argument [can] be offered that the decision is best for the child, all things considered”, and if the decision does not expose the child to obvious risk of harm.
The paper objects that (a) a lot of terrible practices can be ‘reasonably argued for’ if you start with trash assumptions (e.g., religion); and (b) some harms are worth the benefits.
The paper instead recommends the “reasonable subject standard”, which says “parents should decide for their child as the child would if she were a moral agent trying to act prudently within the constraints of morality”.
28. Talks about how to handle decision-making for unrepresented patients. Unclear what they think you should do.
Argues that “the multi-stakeholder process is ethically superior to solo decision making”: “solo decisions about what is in a patient’s best interest run a serious risk of being arbitrary or biased, even if both the physician and the surrogate make their respective decisions after careful consideration”.
30. Argues that the HEC-C program (again!) should be more diverse—what they seem to mean by this is not the standard concept of ‘diversity’ but that it should cover a more diverse set of medical situations.
Specific objections include:
The paper authors haven’t taken the HEC-C examination, but they’re worried it might have similar flaws to a more standard examination, USMLE, where “questions do not depict complex ethical situations to critically think through and resolve, the content is often based on federal laws and regulations rather than ethical rules, students are prompted to either choose the ‘next best step’ or the most plausible answer that tests students’ reading comprehension more than their ethical knowledge, and correct answers often contradict the reality of patient care in clinical settings.”
Worries that curriculum standardization “restricts diversity of shared ideas and experiences”, that HEC-C focuses too much on inpatient settings, and that the $650 fee for taking the test is too high.
They want less reliance on multiple-choice questions. They support “introducing short answer questions on the HEC-C examination, and we strongly recommend a standardized patient or mock consultation component by which communication skills, including empathic responses, are assessed, as well as, how well participants are able to ‘read the environment’ and the overall context of the presented ethical issue.”
31. Argues that informed consent is ‘nonsense’ because people sometimes believe multiple different things.
Rather, the author thinks it’s nonsense because people have different social roles and relationships, and because goodness is about what serves the group, not about what the individual wants or consents to.
More from the paper: “Everything I do is affected by and affects others—for good or for ill. And if this conclusion is philosophically or politically uncomfortable, well, tough: we are all members of society; we’ve all put our signature to some form of social contract. [… B]ecause of the kinds of animals humans are, the good of society will also be the good of the individual. [… P]art of the job of ethics and law is to help a person’s subjective conception of the good coincide with the objective good. That is best achieved by facilitating recognition of the fact that the individual patient’s good is the wider good. This accords well with what we know empirically about the roots of human happiness. Altruism and relationality make people happy. Selfishness makes them miserable. (Foster and Herring 2015). That’s what one would expect if the relational model of human beings is correct.”
26. I have no idea what this paper is about. I don’t think the authors do either.
That sounds a little harsh. From trying to read it, I felt like the main difficulty was that the authors assumed the reader to know what “the ethical and conceptual framework (ECF)” and “a learning health‐care system (LHS)” were. But they did open with a pretty clear list of questions they said the article was about:
(a) What is the difference between practice and research? (b) What is the relationship between research ethics and clinical ethics? (c) What is the ethical relevance of the principle of clinical equipoise? (d) Does participation in research require a higher standard of informed consent than the practice of medicine? and (e) What ethical principle should take precedence in medicine?
Some of these were a little unclear to me (I don’t know what the “principle of clinical equipoise” is), but again that just reflects my lack of knowledge rather than any problem with the authors.
In case anybody else doesn’t know the definition seems to be “Clinical and personal equipoise exists when a clinician has no good basis for a choice between two or more care options or when one is truly uncertain about the overall benefit or harm offered by the treatment to his/her patient.”
If that principle holds you are not allowed to run replication trials because in a replication trial you already have a good basis for believing that one of the groups gets a better treatment.
I’ll agree that I worded it pretty harshly, but I do think I’ll stand by it not being a useful paper. Imagine a science paper that claimed to be about the following list of questions:
a) What is the difference between iron and xenon? b) What is the relationship between solid matter and gaseous matter? c) What is the practical relevance of the principle of least action? d) Does investigating radioactive materials require different experimental procedures than investigating other physics? e) What kind of statistics should be used in physics papers?
Assuming that we weren’t clear on the answers to those hypothetical questions, they do seem like they’d be important to address? You could fairly argue that trying to address all of them was packing too much content into a single paper, but then even raising them for the purpose of drawing attention to them could be useful.
I do think that packing five separate questions into one paper is too much, but also going through those questions one at a time:
(a) What is the difference between practice and research?
This question seems...obviously stupid? It might be intended as a Socratic lead-in of some sort, I suppose.
(b) What is the relationship between research ethics and clinical ethics?
This question seems extremely vague. I can imagine related sub-questions that could be meaningful: e.g. ‘does research need to use different ethical standards than clinical ethics’ (like (d) below), ‘does research need separate ethical regulations from clinical treatment, or can it use the same ones’, ‘should clinicians be worried about the ethics of researchers who give them treatments/vice versa’, but in the absence of a more specific question I’m not clear on what this means or what an answer would be.
(c) What is the ethical relevance of the principle of clinical equipoise?
I hadn’t heard of this. Per Christian’s answer above it might be a reasonable question, although it seems a bit tautological asking for the ethical relevance of a principle if the principle itself is an ethical principle. Still willing to accept it as a probably-okay question.
(d) Does participation in research require a higher standard of informed consent than the practice of medicine?
This is a good question. If it were the only question in the paper I would like it.
(e) What ethical principle should take precedence in medicine?
We take a kind of abrupt turn here into a very high-level meta-question. It’s weird to combine this with a bunch of lower-level questions, and even weirder to put it at the end—surely if you need to decide what ethical principle to use that needs to be the first thing you do?
So I think we’ve got either 2 or 3 reasonable questions muddled together into one paper along with some silly/poorly defined ones. Then, looking at the ending, the main thrust of their conclusion appears to be ‘our approach is useless for thinking about these questions’:
It can be concluded that [our approach] has not provided us with conceptual instruments that would resolve the ethical debate between proponents of the segregation and integration models…
...[our approach] also does nothing to resolve the problem of a researcher’s clinical obligation. Rather, it creates a new source of moral obligation: a health‐care system. Next, [our approach] seems not to resolve the controversy over the concept of clinical equipoise.
I am overall not very impressed by this paper. I don’t think it sounds actively evil or anything, I just think it sounds like a waste of (a great deal of) paper.
Many of these are rather hard to read. The following are my even-more-slimmed down summaries based on skimming just those few paragraphs. Some may be in error, if you disagree with any let me know:
1. Argues in favor of more bioenhancement and against refusing to do bioenhancement for reasons of ‘egalitarianism’, though in a somewhat wishy-washy way ‘we endorse a cautious proposal’.
2. Not really related to bioethics—argues in favor of pseudonymous publishing.
3. Argues in favor of ‘nudging’ patients to obtain consent for treatments.
4. Argues that if you favor assisted suicide when doctors do it, you should also favor it when for-profit entities do it.
5. Argues that all newborns should be screened for critical congenital heart diseases, without exemption for parental religious beliefs.
6. Tells the story of a patient who demanded his doctors do something really stupid and refused to budge. Unclear what moral, if any, they want to draw.
7. A weirdly meta paper that evaluates methods for evaluating ethics. I have no idea what this means.
8. Frets about off-label use of ketamine being worrying, recommends formal research into it combined with stricter regulation of off-label uses.
9. I have no idea what this paper is about. It tells the story of a kid called James, but I don’t know what it wants to draw from it.
10. Argues against ‘nudging’ people to register as organ donors.
11. Argues that traditional consent is inadequate for a ‘biobank’ (which stores biological samples of people?) and that you should use something called a ‘Participation Pact’ instead.
12. Argues that bioethicists should pay attention to neuroscience?
13. Agrees with someone called Lee that bioethics and environmental ethics should be linked, but disagrees that his idea of ‘public health ethics’ is a good way of doing it.
14. Asks about how to allocate limited supply of a drug called nusinersen for spinal muscular atrophy patients.
15. Argues that consent to organ donation is ‘vague’ in harmful ways.
16. Talks about ‘right-to-try’ trials where terminally ill patients try untested drugs. Some waffling, I’m unclear if they approve or not.
17. Argues that diversity in researchers will help make research better.
18. Talks about what to do if your patient’s relatives try to fix him with prayer and magic. Appears to argue that you should support the relatives as well as the patient.
19. Argues that conscientious objection to abortion should not keep you from being sued if your refusal causes injury.
20. Proposes a different standard for how to evaluate parent’s decisions re. medical care for their children. Unclear how it differs.
21. Argues that standards for resolving e.g. disagreement between doctors and family members on what to do with an incapacitated patient should be simpler.
22. Argues that all children should get measles vaccination. Claims that this paper’s conclusions ‘reframe the dialog on measles vaccination...from a framework of what is owed to parents...[to] the framework of what is owed to children’. Unclear why that wasn’t the framework we were in already.
23. References Gattaca, then argues (against some other bioethicist) that bioenhancement can be good if regulated.
24. Argues that ‘professional guinea pigs’ who participate in trials for money are being exploited by capitalism.
25. Argues that palliative care for children is currently in a very bad state, and that we should do research into it and make it better.
26. I have no idea what this paper is about. I don’t think the authors do either. (EDIT: second opinion is that I’m being uncharitable here, see Kaj below).
27. Declares that a 2010 study on premature babies called SUPPORT was unethical, arguing that it placed one of its treatment groups at higher risk than they would have been without the study.
28. Talks about how to handle decision-making for unrepresented patients. Unclear what they think you should do.
29. Argues that the HEC-C program (a healthcare certification program of some kind) is good.
30. Argues that the HEC-C program (again!) should be more diverse—what they seem to mean by this is not the standard concept of ‘diversity’ but that it should cover a more diverse set of medical situations.
31. Argues that informed consent is ‘nonsense’ because people sometimes believe multiple different things.
32. Argues (against some other bioethicists) that you do not need consent from a patient to test whether they are brain-dead.
33. Book review of a book arguing that medical ethics ‘cannot be regarded as an extension of common morality’ and must be treated as a completely different thing.
Having article-by-article summaries seems useful here. And since none of us have read most of these articles, this might be a good use case for a Google Doc, so different people can improve on summaries if they spot an error.
Here’s a Google Doc that starts with aphyer’s summaries and allows for article-specific follow-ups: https://docs.google.com/document/d/1tmrrTlWLxseSfudS7IWPMEFUWrLoSewFXOjj2ilwFPA/edit. If you add something to the Google Doc, I encourage mentioning it in this comment section so others can be notified.
I’ll also add a link to the Google Doc in the OP.
Some people might also prefer the Google Doc format for critiquing particular articles, and not just summarizing? Whether in the Doc or on LW, I want to encourage people to critique specific articles or arguments if something catches their eye, so we don’t stay at too high a level of generality to notice subtle errors or biases, disagreements with other LWers, etc.
_________________________
My own responses to aphyer’s summaries:
This and the other bioenhancement paper were written by Julian Savulescu, who studied under Peter Singer and co-edited a book with Nick Bostrom.
Also argues that informed consent is based on “social conventions” rather than on theories of autonomy.
Treats it as obvious that commercially assisted suicide is a terrible idea; therefore physician-assisted suicide is bad too.
I revisited the paper itself to find the main morals it draws:
(1) Even though paternalism is theoretically a bad idea when a patient “has been judged competent to make his or her own decisions”, this example shows that there can be practical, case-by-case reasons to be unusually pushy in trying to change patients’ minds.
(2) Normally, doctors and patients are basically strangers. The “ethics consulation process” provides an opportunity to build a higher-trust relationship and/or build a mutual understanding allowing for this kind of useful paternalism.
From a part of the paper that wasn’t excerpted: “This project was undertaken in response to a growing concern both within and outside the field of clinical ethics that CE consultants who interact with patients, families, and health care professionals need to demonstrate competency to respond effectively to ethics consultation requests (Fox 2014, Dubler et al. 2009). Responding ‘effectively’ raises the question of what constitutes ‘quality’ in ethics consultation. While there has been historic value in the field placed on preserving a diversity of approaches to ethics consultation, diversity should not preclude evaluation of quality. Clinical ethics must continue to embrace diversity of approaches while sharpening our commitment to measurement of quality.”
The proposal is to assess quality by evaluating a portfolio consisting of the candidate’s eductional background, “a written summary of the candidate’s philosophy” of clinical ethics consulation, letters of recommendation, and the “centerpiece of the portfolio”: “six in-depth, detailed case discussions in which the candidate led or co-led the ethics consulation”. Since there are a lot of open questions and disagreements in bioethics, “presentation of arguments regarding controversies was given credit as long as they were argued clearly and coherently”.
A hospital has insufficient staffing over the weekends, forcing them to switch a patient to a worse therapy. The paper argues that this is ethically unacceptable, and the hospital should have foreseen this possibility and sent the patient to a better-staffed hospital at the outset.
On an unrelated side-note, the paper asks whether the “worse therapy” is actually worse, noting that there’s disagreement/ambiguity in the medical literature.
Also argues for “mandated active choice,” which “presents people with the choice of registering as an organ donor or not, and requires them to make a decision, for example, by making the renewal of their driver’s license conditional on them stating their donation preference.”
And that they should do less theoretical work, and engage more with real-world specifics and stakeholders’ views.
E.g. (from the paper itself): “since deep brain stimulation (DBS) trials for treating motor disorders such as Parkinson’s disease and other neuropsychiatric disorders began almost 25 years ago, there have been hundreds of theoretical papers about numerous possible ethical challenges (e.g., dehumanization, loss of autonomy, changes to personal identity, authenticity of affective states, how to obtain meaningful informed consent, therapeutic misconception, human enhancement). However, in 25 years of work on DBS there is a surprisingly small amount of empirical literature about the perspectives and experiences of stakeholders (e.g., patient-participants, caregivers, clinical trial or treatment decliners, clinicians, researchers) regarding these neuroethics issues and whether and how these issues are manifested.”
The paper is opposed to right-to-try, and warns that “the use of investigational drugs may gradually turn into fantasy therapy”.
The “best interest standard” says that a parental decision should be respected if “a reasonable argument [can] be offered that the decision is best for the child, all things considered”, and if the decision does not expose the child to obvious risk of harm.
The paper objects that (a) a lot of terrible practices can be ‘reasonably argued for’ if you start with trash assumptions (e.g., religion); and (b) some harms are worth the benefits.
The paper instead recommends the “reasonable subject standard”, which says “parents should decide for their child as the child would if she were a moral agent trying to act prudently within the constraints of morality”.
Argues that “the multi-stakeholder process is ethically superior to solo decision making”: “solo decisions about what is in a patient’s best interest run a serious risk of being arbitrary or biased, even if both the physician and the surrogate make their respective decisions after careful consideration”.
Specific objections include:
The paper authors haven’t taken the HEC-C examination, but they’re worried it might have similar flaws to a more standard examination, USMLE, where “questions do not depict complex ethical situations to critically think through and resolve, the content is often based on federal laws and regulations rather than ethical rules, students are prompted to either choose the ‘next best step’ or the most plausible answer that tests students’ reading comprehension more than their ethical knowledge, and correct answers often contradict the reality of patient care in clinical settings.”
Worries that curriculum standardization “restricts diversity of shared ideas and experiences”, that HEC-C focuses too much on inpatient settings, and that the $650 fee for taking the test is too high.
They want less reliance on multiple-choice questions. They support “introducing short answer questions on the HEC-C examination, and we strongly recommend a standardized patient or mock consultation component by which communication skills, including empathic responses, are assessed, as well as, how well participants are able to ‘read the environment’ and the overall context of the presented ethical issue.”
Rather, the author thinks it’s nonsense because people have different social roles and relationships, and because goodness is about what serves the group, not about what the individual wants or consents to.
More from the paper: “Everything I do is affected by and affects others—for good or for ill. And if this conclusion is philosophically or politically uncomfortable, well, tough: we are all members of society; we’ve all put our signature to some form of social contract. [… B]ecause of the kinds of animals humans are, the good of society will also be the good of the individual. [… P]art of the job of ethics and law is to help a person’s subjective conception of the good coincide with the objective good. That is best achieved by facilitating recognition of the fact that the individual patient’s good is the wider good. This accords well with what we know empirically about the roots of human happiness. Altruism and relationality make people happy. Selfishness makes them miserable. (Foster and Herring 2015). That’s what one would expect if the relational model of human beings is correct.”
Your hyperlink currently includes a period at the end of the link URL and so doesn’t work right.
Thanks, fixed.
That sounds a little harsh. From trying to read it, I felt like the main difficulty was that the authors assumed the reader to know what “the ethical and conceptual framework (ECF)” and “a learning health‐care system (LHS)” were. But they did open with a pretty clear list of questions they said the article was about:
Some of these were a little unclear to me (I don’t know what the “principle of clinical equipoise” is), but again that just reflects my lack of knowledge rather than any problem with the authors.
In case anybody else doesn’t know the definition seems to be “Clinical and personal equipoise exists when a clinician has no good basis for a choice between two or more care options or when one is truly uncertain about the overall benefit or harm offered by the treatment to his/her patient.”
If that principle holds you are not allowed to run replication trials because in a replication trial you already have a good basis for believing that one of the groups gets a better treatment.
I’ll agree that I worded it pretty harshly, but I do think I’ll stand by it not being a useful paper. Imagine a science paper that claimed to be about the following list of questions:
a) What is the difference between iron and xenon? b) What is the relationship between solid matter and gaseous matter? c) What is the practical relevance of the principle of least action? d) Does investigating radioactive materials require different experimental procedures than investigating other physics? e) What kind of statistics should be used in physics papers?
Assuming that we weren’t clear on the answers to those hypothetical questions, they do seem like they’d be important to address? You could fairly argue that trying to address all of them was packing too much content into a single paper, but then even raising them for the purpose of drawing attention to them could be useful.
I do think that packing five separate questions into one paper is too much, but also going through those questions one at a time:
(a) What is the difference between practice and research?
This question seems...obviously stupid? It might be intended as a Socratic lead-in of some sort, I suppose.
(b) What is the relationship between research ethics and clinical ethics?
This question seems extremely vague. I can imagine related sub-questions that could be meaningful: e.g. ‘does research need to use different ethical standards than clinical ethics’ (like (d) below), ‘does research need separate ethical regulations from clinical treatment, or can it use the same ones’, ‘should clinicians be worried about the ethics of researchers who give them treatments/vice versa’, but in the absence of a more specific question I’m not clear on what this means or what an answer would be.
(c) What is the ethical relevance of the principle of clinical equipoise?
I hadn’t heard of this. Per Christian’s answer above it might be a reasonable question, although it seems a bit tautological asking for the ethical relevance of a principle if the principle itself is an ethical principle. Still willing to accept it as a probably-okay question.
(d) Does participation in research require a higher standard of informed consent than the practice of medicine?
This is a good question. If it were the only question in the paper I would like it.
(e) What ethical principle should take precedence in medicine?
We take a kind of abrupt turn here into a very high-level meta-question. It’s weird to combine this with a bunch of lower-level questions, and even weirder to put it at the end—surely if you need to decide what ethical principle to use that needs to be the first thing you do?
So I think we’ve got either 2 or 3 reasonable questions muddled together into one paper along with some silly/poorly defined ones. Then, looking at the ending, the main thrust of their conclusion appears to be ‘our approach is useless for thinking about these questions’:
I am overall not very impressed by this paper. I don’t think it sounds actively evil or anything, I just think it sounds like a waste of (a great deal of) paper.