And Do the Bioethicists Understand Enough of the Science?

To be well-versed in how a discovery might impact society or a particular individual, bioethicists need to comprehend the discovery. It is hard to say how much science or technology they need to master. The more complex the discovery, the better an understanding helps in informing a solution. In the privacy sphere understanding the basics (even the definitions of) cybersecurity, blockchain technology, edge computing, or computer generated data reidentification capabilities is necessary in some cases, yet basic privacy considerations can be outcomes-based. (Is it ok for bioethicists to say we do not care how it is done, but data must be kept safe?) In genetics, knowing the capabilities of gene editing and which applications of it would result in inheritable traits is necessary. In the topic of environmental ethics, understanding the causes and contributors to climate change, the options for sustainable energy, and the discoveries that recycle plastics, or remove plastic from the ocean is important. Without knowing all aspects of how they work, ethicists contribute to the limits on and can expand the scope of the discovery. It is a synergistic field where bioethics contributes. To harness the interdisciplinary nature to reap a whole larger than just a sum of each field’s contribution, a cross-categorical knowledge base or the ability to read up and quickly absorb the basics is key.

Bioethics as Interdisciplinary, for Better or for Worse

Bioethics is de facto interdisciplinary in nature. Scientists and those in medicine, etc. engage in behavior that, where relevant, reflects their social norms and moral code. The impact of scientific discovery on society (even on those who do not actively use the discovery) is often deliberated by the bioethics community. Philosophers, thinkers, and lawyers have a role in fleshing out bioethics. Aligning how the many professionals involved evaluate the stakeholders’ interests is an important effort. Ethics is defined as moral philosophy and bioethics should hold tight to its relationship to morality and the complexity of navigating diverse cultural and social norms, laws, rightness and goodness, and individuality. Sometimes those who make a scientific discovery are not in a position to regulate its use or availability. Bioethics can act as a check on them.

However, in practice, many people in bioethics either have a dual role as a medical practitioner, researcher, or scientist and bioethicist. It is difficult to be a check on one’s own industry. As a field devoted to ethics, bioethics does not prevent conflicts of interest very well. For example, pediatricians sit on pediatric ethics committees. Doctors of all sorts sit on hospital ethics committees. US pharmaceutical companies’ bioethics committees include employees. Whether the conflict of interest poses a problem, furthers a bias, or promotes a product is difficult to measure. Many ethics committees do have unbiased members and the ones with seemingly built-in conflicts of interest may be educated in absorbing all viewpoints. Aside from conflicts, ethics committees tend to have more clinicians or scientists than they do philosophers or lawyers.

Clinical bioethics include social workers, patient advocates, possibly caregivers or people deciding on their own care. In specialty fields, geneticists, cybersecurity experts, technology analysts, privacy lawyers, and other experts contribute to bioethics. The clinical ethics committees are regulated, e.g., in New York there is a requirement that a social worker be on each.

The bread and butter of bioethics, the thing that makes it what it is, is that it includes philosophers, researchers, sociologists, psychologists, political scientists and policy experts each contributing to the body of theoretical work necessary.

A remaining issue, especially in the clinical sphere, is whether bioethics committees can absorb the breadth of the literature and apply moral philosophy to complex decisions in a timely way.

Critical Thinking, Considerations, and an Inclusive Approach

The material on this website is geared toward people who have an interest in bioethics, are familiar with topics and arguments within the field, and have an interest in examining broader considerations.

Some sections that discuss prominent reasoning assume familiarity with basic arguments. Many articles and books were chosen to provide readers with an understanding of prevalent methods of analysis and thinking, to set forth the issues, and to highlight discrepancies or areas where the current frameworks lack guidance to solve more complex issues.

Value of Analyzing Stakeholders: What is at Stake?

Stakeholder analysis is necessary because in bioethics sometimes the voice of the powerful (often Big Science, Tech, and Pharma, or doctors and hospitals) overpowers the voice of the vulnerable yet the vulnerable may be the ones a decision affects more deeply. In my work on parental refusals, I note that the parents live with after-effects of coerced or compelled care, making their stake in the decision more personal. Similarly, when industry promotes very long patents and high pharmaceutical prices, those trying to afford and access pharmaceutical products, including populations in countries with lower wealth and income per capita and, in the US, those without insurance, suffer a personal harm. The process of weighing stakeholders must account for vulnerabilities, personal effects, as well as incentive to innovate and role in providing care.

Stakeholders with a profit motive may be undeserving of some of the ethical heft attributed to them. Bioethics is peculiar in that institutional and corporate self-regulation are a current cornerstone of the field. Hospital ethics committees, corporate governance committees and even patient advocates employed by pharmaceutical companies and hospitals have built-in conflicts of interest. Law differs in that it is an outside check on corporate or physician behavior when the behavior breaks the law. In some cases, the law may reflect the ethical position. In others, an ethics violation very well may be legal. Looking into behaviors that are legal but seem unethical is difficult for those outside the system. In hospital settings, patients are directed to hospital ethics committees. Those committees should weigh what is at stake for the patient objectively. Yet their ties to the doctors and hospitals could interfere with the objectivity.

The frameworks here were developed with an eye to stakeholder analysis.

Adding to Bioethical Analysis

Welcome to Modern Bioethics. I have pulled together articles and books covering broad topics to demonstrate the methods and frameworks in place for analyzing traditional and new issues in bioethics. I also highlight the shortfalls of some known frameworks and offer inclusive frameworks or necessary add-ons in some cases. By curating a collection that includes authors who analyze fact patterns using different approaches, I aim to promote forward thinking approaches to complex scientific and medical ethical dilemmas. For example, some issues are best resolved by using a broad syndemics framework, e.g., in analyzing the effects of policies on the harms caused by the pandemic. Other issues may require expanding on the four principles — looking more deeply into how beneficence is interpreted with an eye to underlying philosophy or creating multiple justice frameworks.

Beneficence, for example, is doing good, which differs from being good, something that might be better addressed with virtue ethics. Beneficence cannot operate without limitation or autonomy would be sacrificed.

This mini-course focuses on how these expansive frameworks apply and which frameworks are most helpful in addressing which issues. This project is an effort to contextualize bioethical dilemmas, to expanding the thought process to include more considerations, and to explore  the stakeholders and the ethical differences in their stake. Critical thinking and logic will help you see the breadth of the issues, contextualize them, delineate the role of public policy or even global cooperation from the role of corporate, hospital, or even individual behaviors. There are a lot of stakeholders in bioethics, sometimes the arena is global and individuals everywhere will be impacted by a scientific discovery. Some people are more able to speak for themselves or hold more power in the conversation. In some countries corporations or the government drown out other voices.

I do not focus on the conclusions. This program expands the bioethics arena beyond principlism and expands the depth of analysis when principlism is applied. Rather than leading to checklists, something I do find valuable in preventing ethics breaches or problems in clinical settings, this course’s goal is to promote thinking about bioethics using multiple frameworks to define issues and problem-solving techniques. The best solutions involve compromise if not consensus, although as you will analyze the role of stakeholders, some solutions concern individual rights or autonomy. In those cases, sometimes the best solution might reflect negative rights, sometimes called natural rights, and the compromise or consensus is that individuals decide for themselves.

You can expect to learn frameworks to inform analysis of person-centered care, justice issues, disasters and pandemics, reproductive health, genetic enhancement, and conflicts of interest.

This course is not meant to promote a viewpoint. It is meant to promote thinking and to encourage depth of discussion with an eye to consensus or compromise. Rather than agreeing to disagree, something that allows people to walk away righteous and even angry, those evaluating bioethical dilemmas should think through both positions and aim to understand the other stakeholders’ reasoning. Reasoning and deliberation can lead to mutual understanding, allowing people to appreciate other viewpoints, and ensuring that the most well-reasoned, all-things-considered approach will be contemplated and poised for success, or at least for respect. By propelling views supported by reasoning, data, and ethics, inclusive ethical frameworks can move bioethics to a forward-thinking field that values multiple stakeholders and brings parties together.