Authenticity in Bioethics: Saying It in Your Own Words and Phrases
In the bioethics realm, there are a pre-set language, basket of concerns, and principles to sort through ethical dilemmas. But generally, people are more authentic when they express themselves in their own terms. This post explores whether the chosen language is setting artificial parameters in bioethics. The four principles and the most noted concerns like scarce resources, access to care, or algorithmic bias may disguise other important concerns and lead to predictable lapses that are detrimental to public health and society. The process by which professional associations, higher education, and self-selected social groupings devise special languages, frameworks, and strategies for analysis may validate beliefs and funnel people toward the same set of concerns and solutions.
When I was a bioethics student, one professor really liked to use polls in the class. The use of binary polling questions was a challenge for me. I cannot commit to a yes or no when something is phrased with all the weight of someone else’s language, framework, and priorities. My answer was always “it depends”, which was not a choice on the official poll. “It depends” recognizes the variables not mentioned, the big picture, the “what will this mean to society or public trust?”, the details that were not provided in the hypothetical, the digging not yet done. And “it depends” speaks to the wording. Maybe I sort of agree, but I would never have phrased it that way. People want to be authentic, or true to their values or priorities. To me, that is easier when I choose the words. Authentic language has a substantive impact. But there is sometimes a need to speak the language of an industry or audience. Relatability while maintaining voice is helpful in conveying a humble message and engaging in the process of figuring things out.
Terminology Might Quiet Feelings
When applying the four principles, beneficence and autonomy would duke it out for determining decision-making authority. A task-oriented way to test the sincerity of an argument may include putting it in your own words. The ability to see through jargon and use words authentically may prioritize overlooked problems. As an example of an issue overlooked in the ideascape, I recently wrote about the impact of negative parental experiences seeking or refusing care for children on public trust in medicine or public health. If I discuss the parent as a decision maker in terms of autonomy and the doctor as wanting what is good for the child in terms of beneficence, the substantive analysis would fit the typical bioethics narrative. But beneficence is not a common or comfortable word, and by monopolizing good, the word positions its challengers as bad.
Sometimes, there is a “hey-wait-a-minute” moment where an awakening occurs and leads to questioning the status quo. Often anything from political affiliation to validation within one’s own professional associations limits creative thinking. For example, describing how a clinical ethics committee operates, some authors use “arms-length” as a tribute almost—as if to say, “It is nothing personal. We are just going to make life’s fundamental decisions for you.” Because arms-length was an accepted term in bioethics and deemed a way to be fair and treat like situations in like ways, people engaging in arms-length bioethics felt validated professionally. But their focus undermined the personalness, the humanness of the effect on a family or individual seeking care. To me, arms-length bioethics is not a common-sense approach, but professional validation made it seem so to others. A movement toward a more person-centered approach is now well under way. (I say “person-centered” a lot and I am not sure of the authenticity of that phrase or whether I am also just using the buzzwords.)
In bioethics we may be answering the so—the why is the thing a pressing issue—and we could overlook the issues if the bioethics language or public health messaging has outlined the concerns. For example, to me, the public health failure to loudly project information about the relationship between obesity and COVID-19 severity and death with any sense of urgency is an ethical lapse. For me, authenticity calls for continuing to highlight the lapse, (to say hey, is this something we should still worry about?), while public health messaging used the limited language of “emergency” to imply that the long-term health issues were not to be prioritized.
To some degree, transparency is folded into informed consent, where it has a role in clinical or research ethics. But unleashed from principlism or the four-quadrant approach, transparency alone is a more obvious concern. In plain language, people want to know the facts, the statistics, and the risks. When public health filters the information, it can feel inauthentic, as though an official decided which story to promote. Authenticity is a reason for having a neutral, objective media. In turn, public trust in the public health apparatus depends on transparency.
The Language of . . .
Adding scientific jargon to ethics—hosting an “ethics lab”—or using STEM language might detract from how we discuss feelings and impact. Ethics talk is not particularly conducive to simplification.
The phrase “allocation of scarce resources” creates a bioethics area of concentration with many possible criteria like first-come, first-served, in-depth analysis of dependents or profession, potential quality life years remaining, or age. Quality-Adjusted Life Years (QALY) seeks to make a formula of something that in plain language would have unlimited factors and nuance. Resource allocation will never be a winning strategy as someone will always be told there is not enough for them. A group or individual will be left behind. Resource scarcity is a serious issue, but “scarce resources” as a buzz-phrase in bioethics places scarcity as a given (a premise, the cause of the need to allocate) rather than a result of a different problem.
Many industries and people see resource availability as a problem of organization and production. During the pandemic, on the ground, many hospitals were scrappy, dealing in the moment, for example, using a single ventilator for multiple people. Putting a tube to two patients is far superior to a group in a conference on Zoom making judgments about whose life is worth more. Common-sense solutions have ethical value — they can cut the ethical conundrum short by solving the problem.
The language of resource allocation can be incongruent with the language of business analyses of increased production, supply and demand, opportunity costs, and incentives. New ESG initiatives may help businesses reach those in need and distribute health-related goods more equitably (ESG originated to evaluate socially conscious investing.) ESG has its own language as well. ESG itself may even sound somewhat disingenuous partly due to the way in which companies are driven to act to please investors. Motives sometimes undermine authenticity.
The term responsible technology could be interpreted as limiting the ethical goals to mere responsibility as opposed to something stronger to characterize technology designed with the greater good in mind. Ethical tech, or responsible tech, sets a minimum. Principles used in evaluating whether a new technology is ethical (fairness, privacy, inclusion, transparency, etc.) might prevent people at the table from noticing the big picture of how the tech could negatively impact humanity. The totality should be a separate principle, perhaps one of total effect, of all things considered.
Sometimes the language of the four principles of bioethics compartmentalizes problems and detracts from analysis of the totality. A new medical technology may be distributed a little unfairly, violate autonomy just a little, be beneficent as to some applications and not others, and slip through a somewhat rigorous compartmentalized ethical analysis. Conversely, labeling a new technology “unjust” because it is not universally accessible, something common where health-related goods are seen as special rather than consumer goods, or where there is a strict single-payer system, can bar access to the new product. (An overemphasis on justice could also be blamed for vaccine allocation rules which led to vaccines sitting around unused before they were made available to the next most worthy group.) Once “justice” is invoked in the context of lack of accessibility to all, anyone prescribing, using, or buying the coveted item may be subject to shaming. Similarly, justice often is the wrong reason for condemning a condemnation-worthy development, like certain enhancements or cloning to produce human beings.
By using the language of privacy and informed consent about data, the language surrounding other potential harms is quieted. Fairness is becoming a stronger principle in technology and is beginning to include financial fairness. Bioethics is increasingly needing to share frameworks with responsible technology, yet both arenas could be more open to big picture issues in natural language rather than checklists of principles. An authenticity check would lead to plain (or complex) language to describe potential benefits and harms. Authentic language may be more interdisciplinary than medical, tech, or bioethics language.
Even use of the passive voice often passes the buck. To be genuine, we need to look at who controls an action. Power identification as a bioethics strategy calls for wording that identifies the actor.
Would my grandmother recognize these words now? As human resources rebrand themselves “talent”, the word loses its meaning. As used properly, the talent had a special talent or above-average skill, i.e., was talented. Talent in the new language of hiring democratizes a workplace and is arguably effective at showing appreciation for the humanness of the employee by acknowledging the person’s special skills even when no particularly special skills are needed for the job. The rebranding of human resources departments as “talent” might reflect an emerging societal preference for collaboration over competition or the market power of the job seeker over the employer.
Medicalized Words
Words like anxiety have become medical diagnoses when they used to have a more mainstream nonmedical meaning. Colloquial use has subtly changed whereby the word anxiety within range of a pediatrician may call for a psych eval. I would be hesitant to use overwhelmed, scattered, or depressed as well. As the meaning of depressed has become more clinical, its non-medical use is dwindling.
Other medicalized words have become overused colloquially—for example, some people might say they have ADD in a flippant way to describe their own scattered behavior when they have not been diagnosed, marginalizing those who do truly have ADD.
Specialization
As noted in a recent post about resilience, specialization can lead to people validating each other’s beliefs and stifle thinking “outside the box”. Sometimes new ways of thinking come with a new vocabulary. The new vocabulary can open a door—for example, new technologies bring with them new words as well as new concerns. Yet a new vocabulary can stifle the use of one’s own terms. Language that ensures authenticity could improve the depth of ethics. Without abandoning other valuable developed frameworks, the authentic use of language may foster common sense and critical thinking.
