Most commenters seemed surprised by the quality of the 33 bioethics papers I sampled. This made me wonder if our views might just be out-of-date — describing the bioethics of a few decades ago, rather than the field as it existed in 2014-2020. Luke Muehlhauser’s review of the history of bioethics says:
Another source of annoyance [for doctors] may have been that bioethicists of the time tended to be more theological and deontological (i.e. less utilitarian), and more cautious about developing and deploying new medical capabilities, compared to doctors.[10]
The early laws and court decisions related to bioethics continue to have an outsized effect,[11] though bioethicists today are probably more diverse than they were in the earliest years of bioethics, and (e.g.) many of them are explicitly utilitarian.
[...]
The Rockefeller Foundation provided substantial initial funding for the Hastings Center, the first major institute focused on bioethics. As the Hastings Center grew during the 1970s, it continued to be substantially funded by philanthropists.[14] Among other early activities, the Hastings Center hired some staff researchers, organized workshops, created a visiting scholars program, and created The Hastings Center Report, which soon became the leading journal in the field.[15]
The Hastings Center Report is still listed as one of the highest-impact-factor medical ethics journals, so I decided to sample ten random papers they released in 2000 to see if these better fit my and other LWers’ stereotypes about the field. A few caveats:
I haven’t looked much at Hastings’ recent issues. If their 2000 and 2020 papers are both bad, the case for ‘bioethics has improved’ is somewhat weaker, and we might need to think about specific subgroups of bioethicists.
This time, I tried to make the papers easier to digest by skimming them and picking out the claims that struck me as most central and/or actionable, trying to avoid excerpting fluff. This is totally different from what I did in the OP, so if the papers below seem very different from the ones in the OP, you might want to double-check the papers to see whether my editorial choices are doing most of the work.
[...] The most important conclusion of the workshop was that, given its worldwide acceptance, it would be a serious mistake to rewrite the Declaration of Helsinki.
[...] It was generally felt that the question of when placebos or “best proven treatment” may be used was determined by the physician’s fundamental duty to do his best for each individual patient, from which derives the ethical concept of equipoise. Clinical trials are only ethical when there is genuine uncertainty as to which arm of the trial will prove better. Several workshop participants— including Robert Temple, director of drug evaluation at the FDA—argued that the low risk to subjects justifies the use of placebo arms in clinical trials when effective treatments are available and equipoise is therefore impossible. But that puts the interests of science and society before the interests of the research subject, which is prohibited by the Declaration, and the physician fails in his duty to do his best for the patient.
[...] A good deal of medical ethics is based on consequentialist claims that social scientists are well equipped to assess. If an ethical claim is based on the assertion that a practice or arrangement is ethically questionable because it results in a particular outcome, then that claim is empirically testable. Philosophical medical ethicists rarely mount those tests themselves. Social scientists, whether using ethnographic methods, reviews of records, or survey instruments, can test those claims.
[...] The social sciences might make a contribution to bioethics by helping the field’s practitioners understand better what’s behind its deeply installed respect for individual autonomy and whether it has assumed more the character of an ideology than a moral philosophy.
[...] Bioethical interventions into health care practice have tended to rely on rational persuasion based on arguments about values—that is to say, on the kind of educative models familiar in university settings, addressed in the main to individuals. Bioethical pedagogy thus chimes with the individualist approach that characterizes so much of mainstream ethics. An approach to both analysis and action that looks less at individuals, and more at the characteristics of institutions and how they shape human response, surely seems worth trying in SUPPORT’s wake.
[… A]t the economic level, managed care relies on the notion of the person as a consumer, as a savvy bargainer in the marketplace. But at the level of service provision, managed care—particularly when it takes the form of an HMO—suggests that people can be responsive to other, less individualist concerns, that they are willing to subordinate some of their own interests to ensure the viability and flourishing of the whole.
[...] It is fairly patent that an appreciation of the character of social structures, of the “cultures” that operate within them, and of their relationship to broader aspects of society are bioethically pertinent matters for which the tools of social scientific inquiry are key. However, the values and sensibilities that are prevalent in the social sciences may make an even bigger contribution. For example, seeing potential moral interest and perhaps even insight in at least some forms of managed care might well be easier for bioethicists if their assessment of fee-for-service financing was tempered with the kind of suspicion about professions that have been an important part of sociology. One’s willingness to see collectivist approaches as in principle at least on a par with individualist assessments of medical ethics might also be easier to achieve if one better appreciated the moral significance of social and group relations as social scientists not infrequently do.
4. Joanne Silberner. “A Gene Therapy Death.” The Hastings Center Report 30(2). Capital Report.
It was what the New York Times headlined a “biotech death.” Eighteen-year-old Jesse Gelsinger died four days after receiving gene therapy for a rare metabolic disorder. It was also the first death associated with gene therapy. As details of the experiment and the death unfolded, with often contradictory information, the field of gene experimentation appeared neither orderly nor well regulated.
[...] On the national level the episode has sparked a closer look at a field that is increasingly lightly regulated even though many gene therapy protocols have corporate sponsors. Some insiders are questioning former NIH director Harold Varmus’s decision to change the RAC’s status from regulatory to advisory. Several politicians notified Varmus of their concerns. In January the FDA halted all gene therapy trials at Penn. And Congress is considering whether it should get involved in oversight of the young field.
[...] Polls have ranked health care fairly high as an issue that’s important to voters, and the number of those uninsured is up to 44 million. As of this writing, however, health care has yet to be a galvanizing issue. Looking back at the last few elections, I’m afraid this year is going to be another case of much noise and little action.
On a personal note, this is my last Capital Report. A column is a chance for a journalist to stretch and vent a little, and I’ve enjoyed it. But I’ve run out of fresh ways to complain about Washington’s inability to come up with a workable health plan, or a good organ transplant policy, or effective safety standards for gene therapy.
[...] Chaplains are committed to ministering to the spiritual needs of the patient as defined by the patient.
[...] But most patients have had little experience with hospital chaplains. We must not base care for the dying on the assumption that everyone—Hindus, Jews, Moslems, Buddhists, and atheists (including some who have struggled for years to free themselves from a Christianity they considered pernicious)— should recognize that they need to call on the Christian chaplain if they want help in dealing with spiritual issues at the end of life.
M.C. is a seven-year-old girl diagnosed with relapsed acute lymphoblastic leukemia (ALL). She lives in a Third World country in South America. A few months after her diagnosis M.C., with her parents and younger brother, presented to the emergency room of a large Catholic teaching hospital in the United States[....]
Currently the hospital has incurred costs of $800,000 for M.C.’s care[....]
The hospital administration has requested an “ethics consult” to decide what to do. [… It] wonders whether the hospital must continue to provide uncompensated care for M.C. If it performs the [bone marrow transplant], then given its current financial situation, layoffs of up to fifteen employees will probably be necessary to offset the additional financial losses.
[...] Commentary by Lauren S. Cobbs: [...] I believe it was appropriate and indeed obligatory to admit M.C., evaluate her, and begin some form of chemotherapy. Actively pursuing therapeutic options beyond this point, however, and specifically pursuing BMT, led to an ethical gray zone. Given her aspergillus sinusitis, M.C.’s prognosis for survival with cure following BMT is reduced so as to be comparable to that for repeat intensive chemotherapy following first relapse. [… B]ecause other equivalent therapies are available and no reasonable option has been made completely unavailable, the clinicians and the institution are under no direct moral obligation to pursue BMT.
[...] Commentary by Peter A. Clark: [...] It was not only medically but ethically and legally obligatory to admit, evaluate, and diagnose M.C. when she came to the emergency room. However, after diagnosing her condition and stabilizing her, M.C. should have been referred to her home country for further treatment.
[… The hospital] does not have a moral obligation to provide a bone marrow transplant if this would generate large financial losses and jeopardize the safety and quality of care available to other patients and to the community as a whole. There is an ethical obligation to continue medical treatment once it has been initiated and determined to be beneficial, but the extenuating circumstances in this case limit that obligation.
[...] No one can be obliged to do what is impossible to do. It is certainly unjust that all people do not have equal access to health care resources; however, this is the reality of our present situation. As a matter of justice, we have an obligation to distribute the medical resources available in a manner that will bring about a reasonable balance of benefits and burdens. No hospital can be obligated to act in a manner that would threaten its ability to sustain its mission of providing health care for the good of society.
[...] Commentary by Margherita Brusa: [...] In the similar case five years ago, the hospital was apparently able to provide treatment. M.C.’s parents could not have known that the hospital’s economic situation had changed. They believed that the first treatment had set a precedent and that they had reason to expect similar treatment. That line of reasoning corresponded to a conception of justice that holds that like cases should be treated alike. Moreover, if they felt that failure to treat would be a form of discrimination, they would have felt justified in threatening to bring the case to the attention of the press.
In fact, a decision to withhold treatment would carry graver consequences than a decision to treat: without treatment, the child will die; the institution will risk bringing scandal to its Catholic identity; and the bad publicity associated with a decision to withhold treatment would harm the hospital’s and its workers’ ability to thrive in a competitive health care marketplace.
Weighing the potential harms and benefits for both the patient and the hospital leads to the following conclusion. The hospital has a prima facie obligation to provide the best care possible to all who present themselves for care. That prima facie obligation can be overridden if the hospital does not have sufficient resources to provide an optimal level of care to all its patients, particularly those who do not have a specific claim on the hospital’s resources allocated for care for the indigent. However, considering the prima facie obligation to treat, coupled with the facts that the funds may be raised over time to cover the expenses and that the negative publicity of denying care would also harm the institution, the appropriate decision in this case is to complete the treatment.
Protecting individuals who participate in research, although a requirement for federal research grantees for over twenty years, is suddenly a hot topic in some Washington circles. The renewed attention is the fallout from a recent series of events—some tragic and some trivial. For those who thought that the days of the Tuskegee syphilis study and Willowbrook were long gone, more recent events, although not of the same magnitude, have reminded policymakers that not all is well in the world of biomedical and behavioral research.
[...] Thus the most recent round of public scrutiny followed the death of eighteen-year-old Jesse Gelsinger during a gene transfer study at the University of Pennsylvania. Before that was the revelation that researchers with the Department of Veterans Affairs in West Los Angeles were performing risky research without obtaining subjects’ consent, and in the background were shutdowns of federally funded research at seven major research universities. Although no one had died at these research sites, the suspensions, meted out by the federal Office for Protection from Research Risks (OPRR), were a red flag that a pattern of disregard for the regulations existed that had to be corrected.
In Pakistan, as in many non‐Western cultures, decisions about a patient’s health care are often made by the family or the doctor. For doctors educated in the West, the Pakistani approach requires striking a balance between preserving indigenous values and carving out room for patients to participate in their medical decisions.
[… E]ven if we were to agree with Charles Weijer that the three principles of research ethics (beneficence, distributive justice, respect for persons) need to be updated to include a fourth principle of respect for communities,[40] it would be quite difficult to know what that means. Does “respecting a community” mean deference to its “legitimate political authority” (p. 510) even if only the males in the community vote?
[… T]hus despite the attractions of the call for community consent for genetic research, I conclude that it is a notion too deeply flawed to be given effect.
Most commenters seemed surprised by the quality of the 33 bioethics papers I sampled. This made me wonder if our views might just be out-of-date — describing the bioethics of a few decades ago, rather than the field as it existed in 2014-2020. Luke Muehlhauser’s review of the history of bioethics says:
The Hastings Center Report is still listed as one of the highest-impact-factor medical ethics journals, so I decided to sample ten random papers they released in 2000 to see if these better fit my and other LWers’ stereotypes about the field. A few caveats:
I haven’t looked much at Hastings’ recent issues. If their 2000 and 2020 papers are both bad, the case for ‘bioethics has improved’ is somewhat weaker, and we might need to think about specific subgroups of bioethicists.
This time, I tried to make the papers easier to digest by skimming them and picking out the claims that struck me as most central and/or actionable, trying to avoid excerpting fluff. This is totally different from what I did in the OP, so if the papers below seem very different from the ones in the OP, you might want to double-check the papers to see whether my editorial choices are doing most of the work.
The random papers this time:
1. Richard H. Nicholson. “‘If It Ain’t Broke, Don’t Fix It.’” The Hastings Center Report 30(1). Old World News.
2. Robert Zussman. “The Contributions of Sociology to Medical Ethics.” The Hastings Center Report 30(1). Original Articles.
3. James Lindemann Nelson. “Moral Teachings from Unexpected Quarters: Lessons for Bioethics from the Social Sciences and Managed Care.” The Hastings Center Report 30(1). Original Articles.
4. Joanne Silberner. “A Gene Therapy Death.” The Hastings Center Report 30(2). Capital Report.
5. Joanne Silberner. “Health Care and the Presidential Election.” The Hastings Center Report 30(4). Capital Report.
6. “Chaplain’s Role in End of Life Care.” The Hastings Center Report 30(5). Letters.
7. “The Million Dollar Question.” The Hastings Center Report 30(5). Case Study.
8. Kathi E. Hanna. “Research Ethics: Reports, Scandals, Calls for Change.” The Hastings Center Report 30(6). Capital Report.
9. Farhat Moazam. “Families, Patients, and Physicians in Medical Decisionmaking: A Pakistani Perspective.” The Hastings Center Report 30(6). Original Articles.
10. Dena Davis. “Groups, Communities, and Contested Identities in Genetic Research.” The Hastings Center Report 30(6). Original Articles.