Science or Humanities: A Need for Adaptability and Individuality Limit the Role of Quantitative and Qualitative Research in Bioethics
Science is defined many ways, but the modern definition used here is knowledge based on data and observation. That is, the distinction between science and the social sciences or humanities is that critical thinking and complex reasoning, generally based in philosophy, logic, and reason, are the backbone of the social sciences and humanities. Critical thought and analysis are relevant in sciences both when preparing research (choosing what to observe and how) and in analyzing research (yes, 60 of 100 test tubes of fluid turned green, but what does it mean). Science often uses more science to check itself. For example, if a chemical compound has a desired effect on a virus in 600 out of 1000 test tubes, but epidemiology shows the effect in the population is 200 of 1000, then the molecular biologists may defer to epidemiologists.
That can be a costly process. For example, when US scientists did not recommend masks to reduce COVID-19 transmission, the advice was based on the size of the molecule and presumptions about transmission. Certainly, to the lay person, many small things fit and are transported in large things. Droplets and aerosols from respiration and coughs were thought to fit through. And many health professionals felt that anything less than sealed sides and complete coverage would not prevent transmission. The World Health Organization said N95 masks kept out particles as small as .3 microns and perpetuated the idea that no other masks worked. To scientists, the ability of the small molecule to fit through the average inexpensive and easily homemade mask was considered absolute. Yet, public health research proved that incorrect. Enough droplets and aerosols could be trapped by a mask for several physical reasons and could be contained in larger mucus droplets that do not penetrate masks to reduce transmission. The openings on sides were not as critical as scientists believed. Absolutism served society poorly when there was time to prevent harm. Science did not see the molecule might use a larger means of transportation, one that would be thwarted by masks.
Another issue in science is what is measured. Some studies of heart medicines used to focus more on the blood number results (effect on cholesterol, LDL, and HDL) when the focus on actual cardiac events is more important to patients. Similarly, many drugs were studied to see if they improve bone density but now the focus is on fractures. One drug, mifamurtide, an immunotherapy, was heavily studied as an add-on to chemotherapy regimens. It was not FDA approved because studies were measuring only the change in risk of relapse. New retrospective analysis of the data shows that the overall survival is better, regardless of relapse.
One example that bothered me was a scientific study determining that retinoblastoma survivors who have had an eye enucleated are less happy, concluding that the survivors need psychosocial clinical interventions when different conclusions (that cancer care needs adjustments, that cancer survivors need to improve their access to nonpharmaceutical and nonclinical solutions, or that the social determinants of health leave out cancer survivors who face discrimination and then endure lower incomes) were overlooked but equally compelling. Similarly, I recently saw a study on obesity concluding more of certain types of clinics and care are needed without any mention of diet and lifestyle. A limitation of science is that things that are observed may happen for many reasons, and scientists often fail even when they gather correct data.
Bioethics is not suitable for scientific research, yet as a body of study that includes scientists, it is often subjected to it. In bioethics, many people run studies which legitimately confirm majority viewpoints. Scientists may approach a problem in an openminded way and then test a hypothesis. A relationship between patient satisfaction and the time a doctor spends with them, to me, is not about ethics, but about customer service.
Kon categorizes empirical research in bioethics studies into lay of land, reality as opposed to an ideal, improving care, and changing norms. Many studies in these categories address logistics as opposed to ethics. They may have value as a springboard for ethical analysis in some cases and not others. To the extent that ethics allows individual views in the analysis of right and wrong, studies fail to provide insight. Right and wrong are not determined by how a majority feels. If 100 percent of a corporate board votes to make a drug price $10,000 per ounce, would that be the ethical price? Empirical data may be good for determining whether largescale problems exist, yet it misses problems that stem from individuality and a plurality of views on important personal topics like genetic enhancement, reproduction and the value of an embryo, end-of-life care, and the role of scientific advancement and pharmacological creations in individual’s lives. Empirical research can devalue minority viewpoints and is rarely good for solving important bioethics problems.
Empirical data often measures how racial and ethnic minorities are treated in the medical system. The research is often then used to make conclusions, some valid, others not valid. Generally, these studies fall rightly within public health, and might be informative in broad policy. Bioethicists tend to agree a lack of access to health care is problematic. Sometimes, research incorrectly validates projections about use of the medical system based on past use when past use was limited due to an inability to pay and a lack of insurance coverage. The very same data can support the opposite conclusion, that past performance shows an access problem. Population data is important, especially to public health and policy. Yet, bioethics is the study of moral philosophy and right and wrong, not just whether supply meets demand. The role of the research is to provide a basis for the thinking. Research in science is sometimes the end of a long process. Research in bioethics is barely a start.
The school to prison pipeline operates similarly. Adding beds in prisons is not an ethical conclusion to observations of the numbers of people with certain emotional diagnoses, very low grades, or in poverty, markers for likelihood of being sentenced as a juvenile. While it is the current public policy, it violates the essence of ethics, and is based on research used to inform policy.
Right and wrong does not depend explicitly on the results of the empirical research. For example, I attest to the wrongness of the standardized lexicon for radiology reporting. I find it benefits doctors, not patients. Yet, if 90 percent of patients love it, and I still maintain its harm, is the system validated? I assert such research would not validate its use because the harm I attribute to its role in a misdiagnosis likely was greater than the benefits it gives those patients who like it. Furthermore, interview questions or surveys would have to be framed to address the enthusiasm with which patients approach it. Enthusiasm for it is likely weak, as most patients probably ignore it and do not even read their own radiology reports. Doctors have researched how doctors feel about the standardized lexicon, something they assert validates it, but is, to me, irrelevant to ethics, and speaks merely to convenience.
The helpfulness of hospital ethics committees is also something subject to research. However, the research often focuses on whether doctors or other practitioners use the ethics committee, whether research studies get more participation when the ethics committee is consulted, and some studies even assume the ethics committee is beneficial and research how to get practitioners to use the committees more. As a parent, I clearly see the role of the committee in quieting the parents’ voice, imposing unwanted care, and supplanting the legal tools at the parents’ disposal. The only time an ethics committee was consulted in my daughter’s care, a hospital-based patient advocate consulted the committee without my knowing and did not bring up my concerns. The patient advocate seemed concerned with privacy understandably, yet privacy was irrelevant to the inquiry. In the patient advocate system and the ethics committee, I found that when a disagreement or behavior does not fit a hospital category (they relegated an inquiry to “quality control” and “privacy”), the patient advocate is ill-equipped to navigate communication and act as a hub for the parents and the ethics committee. Ethics committees, as Robert Truog suggested, should not act as judge and jury.
There are risks to treating bioethics as a science with simple questions and rule by majority: patient satisfaction, quality of care, access to care, and the distribution of scarce resources crowd out some of the deeper and more subtle ethical issues. Attempts to standardize a field that is not conducive to standardization may prioritize the medical establishment’s agenda over the concerns of patients and the public.
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