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.

Poverty & Global Climate Migration

The climate change framework that I set forth in the course accompanying this blog focuses on a broad “No Natural Disasters” protection of those vulnerability to climate change. Climate migration is already underway and has many causes. The ethical approaches should acknowledge human rights, responsibility for climate change, and the root of the moral obligations. A broad analysis requires not just the responsibility for and effects of climate change. It requires looking into the global conditions contributing to major disparities in poverty, disease, and access to education, technology, and healthcare.

Rising temperatures will continue to make areas too hot for living and the National Academy of Sciences predicts that by 2070 extremely hot zones could cover 20 percent of all land. They now cover only one percent. Rising sea levels will endanger some low-lying coastal areas and islands have already considered population relocation. Pacific Islanders barely contribute to  greenhouse gas emissions yet they bear the burden of rising sea levels threatening their land, their freshwater sources, tourism dollars, and housing.

Even where the weather itself remains bearable, economics cause migration. If land that people grow food on for subsistence or for sale becomes too dry to produce food, people will find themselves both food insecure, possibly starving, and financially impoverished. El nino causes land to dry out. In Mexico and Guatemala climate change relocation is common, forcing 700,000 people in Mexico per year to relocate. While adapting by crop selection is possible in some cases, it is unlikely to be a successful long-term adaptation measure. In other areas, fishing for subsistence and industry is failing. Adaptation measures in the home country as well as globally are necessary along with climate change mitigation strategies. That is, strategies to slow climate change and to prevent vulnerability to it need to happen concurrently.

Climate change mitigation strategies and global and local adaptation must be multidimensional. Those most vulnerable to climate change suffer in other ways. Their vulnerability often includes preexisting poverty or over-reliance on a single industry which is vulnerable to the environment. Diversifying sources of income should be incorporated in the process of harm reduction and adaptation. A shift from subsistence farming and one-industry exports to the global opportunities available in a connected world would propel possibilities. Alleviating economic vulnerability would eliminate the need to migrate in some geographical settings (where living is possible but earning enough to import food and live comfortably is not), while in others (where the climate makes the land uninhabitable) it would increase opportunity in the migration process, provide the ability to afford relocation, and alleviate the need to rely on humanitarian aid. Strategies to improve per capita GDP, improve the ability of people to save money include education and empowerment.

The redistribution of populations will have political, economic, and social implications. An openness to receiving refugees includes resettling and ending potential discriminatory practices. International refugee law and international environmental law offer some guidance. Ensuring a smooth transition could change the face of mass migration. Learning from the Mexican border, Syrian refugees, and migrants drowning between Africa and Europe, something is not working in intercontinental migration. The Pacific Islands, Africa, and Central America are already significantly impacted. The IASC Operational Guidelines on Human Rights and Natural Disasters – Protecting Persons Affected by Natural Disasters provide a rights-based approach for humanitarian organizations. Those welcoming migrants, an ethical obligation many countries share, should do so in accordance with accepted human rights principles. An alignment of national politics and global agreements could resolve some human rights violations. But political will remains an issue in immigration policy.

Industrialized countries that financially benefited from corporate polluters cause so much of the greenhouse gas emissions that their obligations to others are morally obligatory. But those obligations are not legally settled. And the big picture question calling for analysis remains: why is global poverty so persistent?

This article by Saber Salem was found in E-International Relations and includes helpful references.

Critical Theory in Bioethics: Challenging Assumptions Behind Beneficence and Justice

Critical theory seeks to challenge assumptions and constraining ideologies, both in a reflective, self-critical way and a normative way. It seeks to identify areas in need of change, identify who makes the change, and challenge prevailing views. Applying critical theory to bioethics would lead to questioning and changing prevailing assumptions as well as the actions stemming from them.

Beneficence in the doctor-patient relationship is a principle that makes sense only because of an assumption about the moral stake of the doctor, hospital, or state in medical care. When beneficence is used to justify paternalistic action (the doctor or state making a medical decision to achieve a “good” outcome against the will of the person who is seeking or refusing care), there is an underlying assumption that the doctor knows not just what is medically “best” but what is best for society or for the person or family. The doctor not only can be medically wrong, but also can be operating on assumptions when the decision is outside the realm of the doctor’s expertise. The doctor may be on an ethics committee adding to the appearance of moral authority.

Critical theory helps enlighten bioethicists about what assumptions and norms are at the root of beneficence and promote analysis of those assumptions. While, to me, beneficence should be eliminated from the bioethics vernacular, the concept of doing “good” is worthy of analysis. Conceptually, good is subjective, debatable, and not conducive to choosing one action and applying it to all people experiencing a certain medical condition. (For example, if the epilepsy patient wanting the keto diet chooses that and has success, a good is achieved. Some doctors seem to feel that the only good or the preferred good is a pharmaceutical option, even when the outcome turns out to be the same. This disconnect is at the heart of the beneficence-autonomy stalemate. The norm that is medicalized, the failure to define and limit the weight of the doctor’s stake, the undervaluing of the stake of the patient who lives with the day-to-day side effects, and the inability to value autonomy as a good in itself constrain bioethics. Critical theory may offer an approach that unleashes competing assumptions and helps ethics committees and doctors avoid both a medicalized norm and the assumption that their priorities should govern when there are other paths to the desired outcome.

Another bioethical theoretical assumption is that justice in the form of making certain things available, free, or accessible acts as a goal, is always a good, and once achieved, would indicate a problem is solved. I see justice as one factor of many affecting a bioethical dilemma. Justice is stretched in bioethics to cover vast subject matter. Justice is often presented as the worthy endgame, an assumption that I challenge. An inability to achieve justice often ends the dilemma prematurely. (Many bioethicists say if X cannot be offered fairly, it should not be offered.) Justice can crowd out other goals. Muddled language like access and divvying up scarce resources successfully can mask the bigger issues of whether the resource in question is the best solution, whether it makes sense to govern its allocation or allow market forces to do so, whether is should be scarce and is not really a “good”. (E.g., justice arguments about access to common antibiotics vary from justice arguments about cloning.) Most importantly when bioethics depends solely on justice to prohibit something that is potentially bad, then when that “bad” is available to all, it would be ethically valid, or an ethically or morally neutral option. Justice arguments can be similar to safety arguments in the implication that once the justice issue is solved, autonomy would justify availability.

When the power is off kilter, as in pharmaceutical advertising, justice fails to protect consumers despite the existence of fairness in the exposure to ads or even in the ability to access a doctor to ask for the pharmaceuticals seen advertised. Pharmaceutical advertising may tempt people into thinking a drug is a cure and contradicts calls for prevention. Organizational ethics tend to govern sales and marketing but justice is a prevailing theme. Rather than challenging the role a drug may play in a crisis of overmedication or in curing a person’s debilitating condition, truth-telling and reading the risks suffice as a way of making the advertising fair. The underlying assumptions in bioethical justice need challenge to highlight circumstances where fairness itself becomes unfair.

Challenges to the Moral Expertise Behind the Four Principles Approach: The “collective is not the patient”

In The “New” Medical Morality: Hippocrates or Bioethics? Jeffrey Hall Dobken writes, “…the neo-discipline of bioethics must be examined for moral effectiveness as well as clinical outcome.” By examining whose “needs and interests” are served by bioethics, Dobken criticizes the marginalization of both the doctor and patient voice. Dobken also questions the four principles and the social compact behind them, comically asserting an assumption that bioethicists are “incorruptible”. By limiting the realm of acceptable choices, bioethics may be limiting the autonomy it claims to protect. His thesis is that bioethics is population-centric rather than person-centric. Interestingly, Dobken argues that bioethics sort of hijacked the virtues espoused by the Hippocratic Oath when the field condemned paternalism but failed to fairly address patient care and opted instead to favor the collective.

To me, bioethics under the four principles regimes fails individuals in the medical care process. Some people may want to apply rules across the platform with little regard to the voice of those most affected by the care. The individual voice is not conducive to universal norms and may be addressed by virtuous doctors fulfilling the non-paternalistic aspects of the oath. Under the four principles approach, the collective may be served by throwing a patient or two under the bus for the sake of standardization. “Moral expertise” works against individuality.

“The stated aim of preserving and protecting individual
autonomy in medical decision-making for patients and
their families has not only become limited in such a climate,
but has been effectively negated…” Dobken

I agree that the “collective is not the patient” but I would hate to see a reversion to the doctor holding all of the power in the doctor-patient relationship. The arms-length bioethics journal articles and hospital committees are a problem. Defining a code of acceptable conduct for professionals is vastly different from a code for individuals seeking or refusing care. The moral authority of the arms-length bioethicist must be challenged. There is not consensus on when, if ever, it is moral to make certain personal decisions for others, limiting their freedom and ignoring their autonomy. While one can develop expertise in ethics and philosophy, can one really be in a position to behave as judge and jury on issues as personal as someone else’s medical care? The concept of moral expertise draws criticism creating a space for bioethics to adapt, step back rather than imposing views universally in a complex, politically and culturally diverse system, and learn from those most affected by decisions.

Dobken Article Journal of Amer Phys and Surgeons Vol 23, No 2, Summer 2018 free and open access by the Faculty at Touro Scholar.

https://www.bioedge.org/bioethics/a-dissenting-view-of-modern-bioethics/12735 Michael Cook, “A Dissenting View of Modern Bioethics,” Bioedge.com June 16, 2018.

https://www.nejm.org/doi/10.1056/NEJMp078109 Robert Truog, “Tackling Medical Futility in Texas” NEJM (ethics committees as “judge and jury.”)

Standing Up to Power: The Price of Whistleblowing & Conscience-Following

Last year, Dawn Wooten, a nurse in Georgia called attention to gynecological abuses of women held in ICE detention. In the US, some whistleblowing is protected and even has a set of processes in place. OSHA has a whistleblower protection program with a web of statutes across industries.

Whistleblower laws left Edward Snowden unprotected, arguably due to both the sensitive nature of the disclosure or the government agency involved. James Alderson uncovered Medicare fraud having immediately lost his job upon refusing to file two sets of documents, one for the sake of overbilling government. The government won an $800 million settlement under the False Claims Act based on Anderson’s uncovering the practice at one hospital — document production revealed a nationwide scheme. Since then, many others were sparked to report on similar schemes. Whistleblowers are often accused of lying, harassed, and even go broke.

Toxic Loyalty

Whistleblowing creates a special ethical dilemma: a duty of loyalty conflicts with doing the right thing or preventing a harm. The ethical choices are difficult and then, the practical effects are a problem as a person becomes ostracized and un-hirable. In policing and the military, whistleblowing seems especially daunting to those who weigh the value of loyalty heavily and may be inclined to underestimate the potential harm caused by remaining quiet. Loyalty is generally an admirable, moral trait making whistleblowing a difficult choice.

Loyalty interferes with accountability for actions performed in bad faith, that pose a danger, or that cover up wrongdoing. Failing to report wrongdoing can implicate someone who fails to blow the whistle as they may appear like a co-conspirator in the act. The moral dilemma should center on the harm avoided or the benefit achieved and the nature of the loyalty. Some whistleblowing saves lives. For example, in the airline industry whistleblowing can range from mechanical risks to intoxicated pilots, both of which could endanger a planeload of people as well as some on the ground. (Hoover). In pharmaceutical whistleblowing, fraudulent marketing and distribution of substandard drugs may be rewarded financially. That is, the FDA wants to find Current Good Manufacturing Practice (CGMP) violations and needs insider help to do so. Because some whistleblowing is financially rewarded, whistleblowers must be able to justify their actions on the merits alone or they may face accusations of impropriety.

Competing loyalty is a better concept for whistleblowing. Loyalty to the public, to potential victims of wrongdoing, or to the entity enforcing the right thing (the government enforcing the laws against a fraudulent company) should count. Whistleblowers should recognize that they are acting in a loyal way, or as a loyal person. Moving toward broad loyalty might allow whistleblowers to limit the competition among moral goods that tugs at their conscience.

Capture & Regulators

Capture is a term for the regulator’s interest aligning with the regulated corporation or industry’s interest. For example, the FAA might have trouble enforcing a regulation against an airline if it has begun to view the airline as a partner. When regulators put the business relationship before the regulatory goals that the public expects, an ethical breach occurs. Whistleblowing within the regulatory agency can keep it true to its mission. On the macro level, prohibiting regulatory enforcement agencies from hiring industry executives could eliminate the temptation for lax enforcement of industry reducing the need for whistleblowing within regulatory agencies. Capture is exacerbated by stronger ties between agency and industry.

What Justifies Whistleblowing? 

To justify or even compel whistleblowing, there must be a harm (imminent, past, or future), a definable problem, and a predictable benefit (or ability to prevent harm). Examples of harms are fraud, endangerment, crimes, covering up illegal or immoral acts. Dawn Wooten witnessed unnecessary gynecological procedures being ordered, patients being treated physically harshly during medical examinations, and a failure to provide translators and obtain informed consent. A wishy washy notion that there is corporate or institutional wrongdoing is not a concrete problem with a known or predicted harm. To Wooten, being a whistleblower was better than remaining part of an “inhumane” system.

The subject of whistleblowing should not include something permissible but not liked (aggressive sales practices may mean the place of employment is not a good fit) or moral judgments (an anti-abortion nurse at a hospital providing an abortion would not be whistleblowing). Whistleblowing is not the tool for employee criticism of business, it is the moral tool for highlighting wrongdoing, preventing harm, and remedying harms.

Evaluate the Loyalty

Awareness of an issue that weighs on a person’s conscience is the beginning. Loyalty to someone or something can become a moral bad. Loyalty to a toxic group should not quiet a voice. Fear of the personal consequences is understandable. Whistleblower legal protections do not alleviate the personal costs. One study showed 100 percent were fired, 90 percent experienced stress and depression, 80 percent experienced “physical deterioration”, 54 percent were “harassed by peers at work”, 17 percent lost homes, 15 percent got divorced, and 10 percent attempted suicide. (Haines, Famous Cases of Whistleblowing, Brock Press 2004) When loyalty to the public or the potential victims aligns with the consequences of the whistleblowing, whistleblowing is more clearly a moral good.

Bruce Hoover, “Whistleblowing in Aviation,” Chapter 7, Ethical Issues in Aviation Elizabeth A. Hoppe, Routledge New York 2019. (arguing the importance of whistleblowing, describing the tension between loyalty and consequences of silence.)

Lars Lindblom, “Dissolving the Moral Dilemma of Whistleblowing,” Journal of Business Ethics 76 (4) (2007). (strong argument for free speech and against the idea of a duty of loyalty to a place of employment.)

New York City Bar Association, Committee Report,
“Call for Measures to Ensure Health, Human Rights and Public Health Protections for Detained Immigrant Women,” February 23, 2021 https://www.nycbar.org/member-and-career-services/committees/reports-listing/reports/detail/medical-abuses-of-immigrant-women-at-irwin-detention

letter from Project South and Government Accountability Project, Re: Whistleblower’s Disclosures on Medical Care in ICE Detention at Irwin County Detention Center: Private Contractors’ Mismanagement is Endangering Immigrant, Worker and Public Health and Safety (Sept. 17, 2020), https://projectsouth.org/wp-content/uploads/2020/09/ICE-ICDC-Whistleblower-Disclosure-to-Congress-091720.pdf

https://whistleblower.org/in-the-news/bbc-news-ice-whistleblower-nurse-alleges-hysterectomies-on-immigrant-women-in-us/

https://www.mahanyertl.com/2018/guide-pharmaceutical-whistleblower-lawsuits/

Animals, Surveillance, and Privacy: Navigating the Ethical Collection and Use of Animal Data

New ethical standards will help discern what is or is not morally (and legally) owed animals now that techno-science affects wildlife and ecosystems. The term privacy rights as it applies to animals highlights the risks of high-tech surveillance using drones, vehicles, and camera traps. Tagging and tracing devices aimed for conservation efforts and to protect and learn more about animals are accessible to the public: people can use telemetry equipment to find tagged animals. To me, privacy in the human sphere tends to imply the entity exercising the privacy does so knowingly, and is harmed by a privacy infringement. In the animal realm, the animal might not appreciate the gravity of a privacy infringement (does it care if its photo is shared on the internet?) but the animal could be directly harmed by the infringement, which can lead hunters, fishers, tourists, or law enforcement to its habitat.

The options of regulating the collection of data (the way it is collected and its purpose) or the use of data (how it is used, who can use it) are open ethics questions. Some purposes could justify more data collection as long as the means are not harmful. Yet an ethical collection for an ethical purpose does not imply that it would be ethical for everyone to access the data and use it for unauthorized purposes, which is how things are now. (There are some regulations like a law in NC prohibits drones for fishing and hunting. Overlapping consensus can be found among activists, conservationists, and some hunters who find drone images to provide an unfair advantage like some traps.)

Proper and improper purposes can help draw an ethical line. If an animal was tagged for purposes considered scientific research geared toward the good of that animal’s population, hunters and the government may find the animals to kill them. I learned recently that the government might use the tagging to kill an animal implicated in an accident like a shark attack. What about animals tagged for a safari–or commercial purposes? Hunters, poachers, fishers all can use telemetry and drones, and they can receive signals from tracing devices placed by scientists.

Technology made imaging as well as surveillance of larger areas common. Cameras designed to protect animals from poachers can be abused or, even without abuse, can lead to unexpected changes in the behavior of animals or humans. Will people enjoy a hike if they are being watched? More importantly, people whose subsistence depends on the outdoors may alter their behaviors.

Scraping data including not just animal photos but who posted, liked, or commented on them from the internet leads to a broad privacy overlap of people and animals. The big data issues have broad overlap and some aspects of the big data framework (Big Data: Privacy, Implications for Medical Care, Public Health, and Cybersecurity) that I provide might also apply to animals. https://modernbioethics.com/courses/frameworks-and-issues-in-bioethics/lessons/modern-privacy-framework-cybersecurity-and-health-data/

Many thanks to the Chris Wlach and the New York City Bar Association Animal Law Committee “Privacy in the Wild” webinar. Below are links to resources by Brett Mills, Steven J. Cooke, and Nathan Young.

Brett Mills (2010) Television wildlife documentaries and animals’ right to privacy, Continuum, 24:2, 193-202, DOI: 10.1080/10304310903362726

Steven J. Cooke https://scholar.google.com/citations?user=CAlipoMAAAAJ

Nathan Young https://scholar.google.com/citations?user=jp_noOUAAAAJ&hl=en

Going huntin’ or fishin’ in North Carolina? Leave your drone at home
Barb Darrow GIGAOM Blog July 3, 2014. https://gigaom.com/2014/07/03/going-huntin-or-fishin-in-north-carolina-leave-your-drone-at-home/#:~:text=The%20state’s%20lower%20house%20recently,prey%20would%20also%20be%20restricted.

Opening or Closing the Window: Can the “Multiple Streams Framework” for Policy Benefit Bioethics?

The public policy theory of multiple streams formulated by John Kingdon in 1984 applies to problems at a time when they become ripe for solving. By aligning the problem, policy, and political “streams” a window to solving the problem arises. In public health, the analysis was applied to UK health disparities and to obesity in Arkansas.

Streams may matter to bioethics as well. That is, bioethics, while distinct from public health, is not beyond politics. The obesity crisis reflects ethical policy lapses, both corporate and government. In Arkansas, the obesity crisis was personal to some people in positions of power and noted in public health data. The comprehensive legislation came when there were political means to achieve it. Growing awareness of issues, public health awareness campaigns, the support of the Arkansas Speaker of the House, and a national conference with a regional obesity discussion led to the alignment of the problem, policy, and politics.

In the bioethics arena, public policy can support ethical goals. But bioethics goes further than public health which is concerned with largescale data. To bioethicists, the obesity problem, for example, concerns how people treat people with obesity, why (not just that) income is inversely related to obesity, how patients with obesity may be disrespected in the doctor-patient relationship, the personal effect of food unaffordability, and the social determinants of health. The prevailing questions must include not just whether a policy will improve health but whether it is an ethical policy and would achieve the desired goals in an ethical way. (E.g. an authoritarian government could solve it unethically.) There even could be one more stream to be aligned to navigate the ethical territory.

When Exworthy, Blane, and Marmot analyzed health inequalities in the UK, they found a growing body of reports highlighting the problem but a policy and political lapse. The authors looked to encourage the policy and political opening using a “policy windows” approach. Adding in an ethics stream distinct from or within the problem or the policy streams could highlight the ethical problem of failure to enact legislation, making the issue one of a moral lapse rather than just a policy lapse. While righteousness could be viewed negatively, an opening to report why the lapse is an ethical wrong in a personal way could garner added political will.

Th US is currently experiencing an open window in the policy arena. To take advantage may require noting not just the existence of problems but the moral lapse associated with those problems. Bringing people together in moral consensus or looking for overlapping ethical consensus could lead to policy changes.

Exworthy M, Blane D, Marmot M. Tackling health inequalities in the United Kingdom: the progress and pitfalls of policy. Health Serv Res. 2003;38(6 Pt 2):1905-1921. doi:10.1111/j.1475-6773.2003.00208.x

Daniel Béland & Michael Howlett (2016) The Role and Impact of the Multiple-Streams Approach in Comparative Policy Analysis, Journal of Comparative Policy Analysis: Research and Practice, 18:3, 221-227, DOI: 10.1080/13876988.2016.1174410

Brent Molough, PEEL Public Health, “The Use of Policy Frameworks to Understand Public-Health Related Public Policy Processes.” October 2012. https://www.peelregion.ca/health/library/pdf/Policy_Frameworks.PDF

John Kingdon, Agendas, Alternatives and Public Policies, 1984 (Boston: Little, Brown and Company). 

Is Bioethics “One-Directional”? Influences on Moral Theory

The practical situation can inform the ethics to some degree. Yet bioethics seems one directional, using theory to generate rules. Then, the rules are applied in clinical situations. Some argue for reflective equilibrium (situations influencing principles, i.e., the process of reflecting on and then revising philosophies) as a component of bioethics. Reflective equilibrium prevents certain prevailing philosophies like deontology from operating without exceptions. Absurd results can follow when rigid philosophies govern situations. (If it is always wrong to steal, one would allow their own child to die…)

The two-directional approach should be distinguished from a middle ground approach like principlism. Real life does make people reflect on morality, ethics, rules, priorities, and decisions. For example, in trauma-informed theories, the observation of trauma and how it affects processes, people, and cultures informs theory and can become a theory. Using multiple methods, phenomenology that studies the experience, and some sociology or psychology empirical research methods to discern and measure the significance of the trauma, policy (at the government or hospital level) can adapt. A study of the on-the-ground experience triggering a policy change may indicate that a philosophy was wrongly applied to a situation or necessitate a new philosophy. Similarly, in my work on refusals, the inability to refuse care affects trust in doctors and hospitals. If a moral theory were one-directional, it may lead to saying it is always right to override a parent or a patient, using an outcomes-based, odds-dependent, and impersonal approach even when the outcome is uncertain or there are many ways to achieve the best outcome. Such an approach would fail to reconcile, value, or appreciate the loss of trust.

While reflective equilibrium, to me, does not quite hit the nail on the head, bioethics does have to be two-directional or multi-faceted. One theory cannot prevail over all others regardless of the situation. Adding complexity to the use of philosophy, theory, and principles is necessary to hash out the stake of the different stakeholders, the workable solutions that avoid the pyrrhic victories of lost trust, and to protect those whose circumstances are different or reflect suffering. Many people (whether deemed “marginalized” or “vulnerable” (bioethics buzzwords) or not) can inform philosophy, policy, and solutions, many of which need to reflect not just propensity to suffer but past traumas.

Facts and Issues: What is the Ethical Difference Between Fact Patterns?

Thinking like a lawyer can help with some bioethics approaches. When given a fact pattern, lawyers tend to zero in on the issues. Some people spend more time on the facts and others move toward identifying issues and applying or suggesting rules that might be generalizable. Both ways of thinking are valuable. A handle on the facts is a must. Manipulating the facts allows for developing reasoning. In bioethics, the facts are a start, the reasoning is key, and the conclusion should be reached based on logic and critical analysis.

The procedure of identifying ethical issues can be avoided when medical or scientific solutions present themselves. Avoiding a bioethical dilemma by providing an alternate solution or by a plan in place (for example, in the common Jehovah’s Witness blood transfusion refusal, there is a medical alternative and, when that is not available, there may be a standing court order) does not cancel the educational benefit of the analysis, even if the deep dive into the analysis and reasoning happens before and after yet not during the emergency circumstances. Thinking like a lawyer helps people move through hypotheticals and prepare to justify or defend their reasoning. Bioethics calls for this theoretical examination. Preventing a shutdown of reasoning because a practical solution presents itself is important to the theoretical field. My big takeaway from that realization is that clinical ethics, to be sound, has to rely on knowledge of theoretical approaches and moral philosophy. A simple medical fix can rightly avoid the ethical issue in the clinical setting (a great use of science), but the bioethical issue is sure to arise again in a circumstance where a practical solution is not available.

Sometimes I think an approach that says disease x, rather than a real condition, (or that hypothetically says a one click human genetic alteration, or a hypothetical environmental technology that would mitigate climate change by doing x) would help people flesh out exactly what sacrifices and goals make ethical sense. Some of the best scholarly work draws attention to thinking outside the box. For example, why do we analyze a duty to rescue those close to us differently from those in need of humanitarian aid. (See Singer, P. (1972) Famine, Affluence, and Morality. Philosophy and Public Affairs 1(3): 229-243 https://www.jstor.org/stable/2265052?seq=1) What is the ethical difference?

Muddying the Waters

This blog (and the accompanying course) is not designed to make bioethics easier or even more academically accessible. It is to address whether ethical dilemmas caused by complex scientific developments or traditions in the doctor patient relationship require broader frameworks and the identification of additional issues.

One goal is to figure out whether upstream policies cause many of the dilemmas. Another is to flesh out analytical tools and considerations for identifying where one profession’s authority over an issue ends and personal authority begins. Is there overlap and which stakeholders deserve to be included in the discourse?

A need for clinical simplicity sometimes supplants moral philosophy. This website addresses whether that is acceptable, what alternatives could be created, and whether added voices would level the bioethics playing field. The frameworks are both deeper and wider reflecting how special the personal issues are and how important public policy is in people’s lives.