I envision a broad bioethics, one that covers the relationships and interactions between science and society. Bioethics ranges from dilemmas arising in the relationship between doctors and people seeking care (often clinical ethics) to largescale societal moral dilemmas. The individual and societal issues are intertwined: each has implications for the other. Does a policy, personal decision, action, or inaction belong in bioethics?
Global bioethics looks at hunger, poverty, a deteriorating environment, climate change, and the barriers to health and wellness seen in places with war, drought, poor political systems, and a lack of civil liberties. The broad view of bioethics includes humanitarianism and global health and wellness. Bioethicists must identify the prerequisites of wellness and the barriers to it.
Societal issues like how to distribute government funds raised through taxation, how to allocate scarce resources, and how to regulate new technologies that can disrupt humankind effect health and wellness. The role of government is the subject of ethical debate. Bioethics can sort through the oughts and the ought nots by offering many approaches and considerations, like frameworks for normative and applied ethics. Its place in philosophy grounds it in moral considerations, distinguishing bioethics from other health, wellness, and medical care considerations, many of which are practical and logistical.
Sometimes bioethics needs to fall back on a smell test that distinguishes simple consumer preferences from deeply meaningful decisions or priorities. Some conflicts or dilemmas are outside of ethics. The number of ethics committee meetings a hospital holds is more logistical than it is a bioethics question. Inside an ethics consult, this issue of whether to allow a child to forgo chemotherapy is deeply ethics related.
Other times, bioethics needs to expand as inaction or inattention to ethical ramifications of an action may have huge implications for society and for public health and wellness as well as for any given individual seeking care. For example, a big-picture issue is how to distribute spending when considering scientific research itself or those public goods that determine health. The push-and-pull of priorities and different precursors to achieving good are complex; the decisions are difficult. Defining what is good, who gets to weigh in, and which goods deserve to be considered the common good remain unanswered questions. Bioethics needs to insert itself in public policy if it is to be effective in sorting through the ethical demands of new inventions and of how and whether any given policy promotes or threatens health and wellness. For example, which drugs or diseases need more government funding, and why?
Broad Bioethics: Social Justice, Tax Dollars, and Philanthropy
There are big questions about what the public ought to have a say in, and what that say ought to be. When put in the context of society, bioethics, and related social sciences and humanities, must evaluate the impact of medical and scientific research decisions on justice. For example, societal spending on stem cell research is a social justice issue. It is often depicted as an issue of beliefs and religion. But it also must be contextualized in broader society, for example, a society in which a single mom raises three kids on minimum wage. She may benefit from opportunities for health and wellness, education, and perhaps nutrition assistance. And securing a healthy future for her kids likely includes preparing them for job opportunities that improve earnings. Using funds that could go to the social determinants of health for niche research that stands to benefit the few or, sometimes, the wealthiest, or that may lead to a development that is more an enhancement than a treatment, or that is a modest improvement over an existing treatment, is a bioethical concern. Yet overlooking the medical needs of people with rare diseases for the sake of spending money on the broader population health poses ethical dilemmas as well. (I am firmly in the camp of recognizing the need for rare disease research, but I also would prioritize health and wellness so that people can decrease the risk of disease and the overall disease load borne by our healthcare system. Helping the public stay well would help the sick have proper medical attention. Wellness would have been outcome determinative in many COVID-19 cases.)
A study published in the Lancet last week confirmed that the “leading risk factors at the most detailed level globally for risk-attributable cancer deaths and DALYs in 2019” were smoking, alcohol use, and high BMI. All three are societal problems: smoking and consuming alcohol are personal and social phenomena, and a high BMI stems from personal and societal factors like food availability, affordability, and choice, and opportunity to maintain fitness versus sedentary jobs or lifestyles. When the problems are societal first and become medical second, identifying the root causes, and applying a strategy that addresses their root cause is crucial. In a strict utilitarian approach, the policies that could improve population health immensely would be a worthy use of taxpayer money.
If the funding is philanthropic, then the role of citizens and democracy is less pronounced. Philanthropy can skew the research toward diseases that have a good fundraising apparatus. The distribution of funding will not always be what is best for the most people and may not meet the demands of utilitarianism, but the use of funds for orphan diseases has the potential to help those left behind by mainstream medical research. A researcher can research rare diseases and aim to help all those with a rare disease. (Cycle for Survival is a great example of fundraising for rare cancer research, as rare cancers make up so much of the cancer prevalence but are overlooked by some sources of public funding. Private dollars are crucial to rare cancer research.)
Government healthcare dollars tend to go toward cures for diseases that afflict more people rather than rare diseases, often called orphan diseases. They also go toward many pharmaceuticals as seed money, often leading to expensive drugs with long patents. (Government could use Bayh-Dole march-in rights.) This model is not set in stone and an abundance of public-private partnerships between hospital systems, pharma, donors, and government allocators is ever-changing. Even the landscape of funding sources changes rapidly. Crowdfunding may help a person pay for care or help a city create a new park where people can exercise and enjoy the outdoors, thereby improving their health. The same tough choices about where to direct research or public health funds arise in the philanthropy context.
Clinical has some relationship to democratic ideals
Bioethics also must go deep: bioethicists may be called on to evaluate deeply held personal beliefs about life itself. Ethics committees may fall under the applied ethics role of bioethics, but applied ethics is often a fraught concept, especially when fundamental disagreements occur. Knowing a lot about ethics does not make someone an expert on anyone else’s deepest moral decisions.
Clinical bioethics has implications for the public. The many seemingly small decisions made at the bedside or in an ethics consult may impact trust in medical care and the pharmaceutical industry. Then there may even be an impact on how people use their role in deliberative democracy. Clinical overprescribing and the breadth of psych-industry prescribing for emotions and behaviors once accepted as within normal call for pushback from those outside of medicine. A role of citizenship is to provide a check on industry.
The pandemic politicized health and health care, and decisions like vaccine refusal were reframed based on different views of the conditions of good citizenship. The blame for distrust was placed squarely on the distrusting and much less on any financial conflicts of interest or past fraudulent or unethical behavior on the part of the pharmaceutical industry. Medical freedom voting is one anticipated result of the pandemic ― people feel the medical and public health communities, especially later in the pandemic, imposed or continued strict precautions without enough justification, based both on the changing virus and the inability of the vaccine to prevent spread as originally thought. The further disregard or contempt for religious and conscientious refusals, especially by those most vulnerable to disregard, including Black and low-income Americans, fuels the big picture distrust. Some people argue that the government prioritized pharmaceutical profits or ignored obvious financial conflicts of interest.
Respect for autonomy-based decisions, like whether a member of society should have access to a medicine or technology that is not quite proven effective (a right to try) or the opportunity to decline to participate in scientific discovery as in the refusal of medication or other medical care, is crucial considering distrust, financial conflicts of interest, and a revolving door between pharma and government.
When bioethics evaluates a personal decision, like whether to compel care against a person’s wishes, bioethicists have an opportunity for humility. I don’t really like arms-length or dispassionate bioethics, which prioritizes fairness over individuality and may result in a one-size-fits-all policy, when an individualized approach would better meet the requirements of moral philosophy. Moral expertise is a hotly debated concept, although expertise in relevant philosophies, theories, and standards is a useful bare minimum for a bioethicist. I am wary of the assumption that someone knows better what is right for someone else. (I also am wary of presuming that the law is always moral.) The analysis in parental decisions must go deep enough to consider the societal and personal costs of loss of decision-making control to the family. Similarly, in caring for older adults, deference to the wishes of the older adult must take priority. At the clinical level, the use of capacity assessments to negate decision making highlights the vulnerability of decision-making rights. Supported decision making and the UN’s right to legal capacity should help solve that problem.
The big picture ethical issues, like whether institutions can curb medicalization or help resolve the problems in society that undermine the social determinants of health, may be overlooked by ethics committees whose rosters are full of cases. Major ethical issues that affect public health and societal wellness are beyond the normal day-to-day operations, but people on ethics committees may have a strong commitment to improving public health and wellness. Ethics committees should have aligned public health and public policy goals, so they do not fall into furthering medicalization. I always wonder what would result if a goal were to decrease the need for medicine rather than to promote access to it. To accomplish that, bioethics could promote the societal goods that are necessary for health.
Who Should Have a Say?
The broad approach, zoomed out, highlights the need for the voice of communities or voters. When an elite, whether medical ethicists, doctors, or public health professionals, makes decisions, some voices may be left out. Bioethicists must recognize their ethical obligations to the people whose health and wellness can benefit immensely from public policy. Most people affected by public policy do not have a seat at the table.
An organized approach to the messy topics
Bioethics as a practice in the hospital setting is intertwined with logistics. Some topics are not ethics: who is on a bioethics committee (NY law covers this to some extent), how to attract healthcare workers, who can call for an ethics committee meeting and how, resolving employee conflicts, or leveling the playing field between doctors and other professionals like social workers, nurses, etc. Other topics are deeply ethical: should a hospital have a policy about how to handle vaccination refusals, what to do in a crisis when a state law is not ready (contingency and crisis standards of care), how to ensure that supported decision making occurs and that those whose capacity is questioned maintain their rights, how to define medical futility, or whether doctors should be permitted to conscientiously object. In reproductive health, there are many clinical issues that are new and changing.
So, what is it, then?
Bioethics, to me, is a space for deep thinking, not for ethical checklists or cursory analyses. Most importantly, it is a field that must concern itself with overall health and wellness of people and the environment. The focus on clinical ethics detracts attention from the population’s most pressing health needs.