Why Don't We? A Look at Medical Illustrations, Ethically.

Medical Illustration is Not Ethically Neutral

Medical illustration is an over 2,000-year-old profession & was first established in Hellenic Alexandria during the 4th century BC or early 3rd century BC. With such an ever-present history, it might be thought we would have a robust and diverse catalogue of informative imagery to look at and learn from, but this is not the case.

Medical illustrations have a significant influence across areas such as education, research, clinical communication, diagnosis, technology, and healthcare outcomes for patients. Unfortunately, even after over 2,000 years, we still have the practice of recreating & continuing the creation of artwork that lacks diversity. With such a large influence, the implications of this lack of diversity in the field of medical illustration and its application are far-reaching, particularly for BIPOC and other marginalized communities. But the solution isn’t just to start making images that are more diverse, no. We already lack imagery that encompasses issues that BIPOC and other marginalized communities face, and we can’t just slap some together and call it a day.

Professional Responsibilities + Considerations

With all this in mind, we have to ask ourselves several questions: what are our ethical responsibilities as medical illustrators, researchers, healthcare & educational providers, and publishers? How are we to ensure that the things we are creating, choosing for our research, and dispersing to our communities equitably represent the populations they apply to? Now, there are other ideas to consider. Some of those considerations include looking at equity and representational accuracy versus scientific relevance, artistic & professional discretion, available resources, institutional authorities, the autonomy of communities & individuals involved, feasibility, and the most important of all: falling victim to tokenism ¹ by poor implementation & mindless creation or use of imagery.

Tokenism | noun | the practice of making only a perfunctory or symbolic effort to do a particular thing, especially by recruiting a small number of people from under-represented groups in order to give the appearance of sexual or racial equality within a workforce.

Source: Unsplash | Cleveland Museum of Art

How Did We Get Here?

Everyone has a role to play. BIPOC & other marginalized communities, such as LGBTQIA+ and those with disabilities, medical illustrators & scientific visual communicators, healthcare professionals, researchers, publishers and journals; everybody has an effect or experiences the effects, and not necessarily positive ones. Within these parties, the following roles & considerations should be made:

Party Involved	Role + Considerations
Marginalized Communities	Marginalized communities are directly affected by the lack of physical, conditional, and experiential representation. If there is change to this, or not, these communities would be the party involved that experiences any benefits or harms over all others.
Medical Illustrators + Scientific Visual Communicators	Medical Illustrators + others in this party get to decide how bodies are depicted, as well as diseases, anatomy, and what patient populations are visually represented. With changes to representation, considerations in resources and other institutional authority may pose a roadblock.
Healthcare Professionals	Healthcare professionals utilize medical imagery for educational, diagnostic, communicative, and clinical based decision-making. What they choose to have in their library will directly affect their patients + surrounding communities. By not having diverse and representative images in the materials they are disseminating to patients, there is potential for poorer outcomes.
Researchers	Researchers, beyond collecting data and relevant information, get to decide what is produced in terms of visual datasets, and they also have the potential to further reproduce existing representational biases. This can result in their research being less robust, as it may miss communities within the scope of their subject matter.
Publishers + Journals	Publishers + journals hold considerable authority over what ultimately gets published, from subject matter to imagery, as well as what is purchased, disseminated, or institutionalized. This (potentially) has played a large part in the cycles that continue to be repeated within the medical, scientific, educational, and broader communities involved.

©️ Marlow Med Illustrate

Power sharing is not equal. Everyone has considerations to make, but they aren’t all the same.

In each of these parties, everyone has certain decisions they have to make. A patient going to the doctor who is handed a pamphlet with general information that doesn’t quite fit their experience or represent them will have much different considerations to make compared to a publisher or journal. Thoughtfulness may occur in order to add diversity, and some publishers and journals do this responsibly, but there are still tokenistic practices afoot, and they further the issue. Further key considerations to be made include rights, harms, justice, and responsibility.

Current research illustrates why these decisions matter. A great example can be made of our current measles outbreak. There is a lack of data, image-based and not, on how measles presents in other populations. This can lead to misdiagnosis, as well as the already present lack of knowledge about measles in clinical & community spaces. This poses a great example of the importance of visual representation and how, beyond aesthetics, it can change the landscape of how and what is produced, interpretations of information, and the application of medical knowledge.

How Much? The Price of Continuing the Cycle

Rights

When it comes to the rights of the people most directly affected by the decisions being made, especially at the institutional levels that they often are, many questions come to light. What rights do BIPOC & other marginalized communities have? The right to accurate health information? The right to benefit equally from medical & research-based knowledge? How are autonomy, consent, and privacy affected? In the decisions that are made at every level, every one of these should be a part of that process. It only starts with the rights of people, but it all rolls into the harms being perpetuated in the continuation of cycles.

Harms

Harm isn’t just physical. There are many forms of harm, especially with the lack of representative images at each level. Things such as clinical harm, educational harm, research & technological harm, and structural/social harms all intersect and build upon each other. Another consideration to be made, too, is the harm that is done not just to the communities, but to those training within healthcare and science. The biases being built within minds that will later continue to shape the architectural landscape that has these existing issues will only further, knowingly or unknowingly, perpetuate the above. Clinical harm is not isolated from educational harm, nor research & technological harm, or the structural and social harms that exist. They all compound on one another, creating a perfect storm.

Justice

Justice within the realm of ethical considerations in the use and distribution of medical illustrations isn’t a singular issue, but a few items of concern: distributive justice, representational justice, and epistemic² justice.

Distributive Justice: Who receives the benefits of medical knowledge?
Representational Justice: Whose bodies are represented as the norm or default?
Epistemic Justice: Whose bodies’ experiences are recognized as legitimate medical knowledge?

Overall, the questions that need to be asked are: are the benefits of accurate medical knowledge being distributed equitably, whose and what bodies are being treated & perceived as medically “normal”, and lastly, whose experiences are the ones being chosen to be representative of “legitimate knowledge” within all spaces? Underrepresentation isn’t just about the imagery, but the representation of these populations in research, publications, datasets, history, and the power that is being taken away from the lack thereof.

2. Epistemic | adjective | relating to knowledge or to the degree of its validation.

Responsibility

The final question: Who is ultimately responsible for fixing this issue? It’s not as simple as saying “well, everyone is obviously”. Everyone does have a part to play in the issue of underrepresentation of populations within the scope of medical illustration, but ultimately, the responsibility lies heavily with those who hold power; everyone should still carry a slice of that responsibility with them in medical illustration, healthcare, research, and the affected populations themselves. Institutions, companies, sole proprietors, researchers; every project that is conducted, decisions have to be made. When the decision is made to continue more of the same, it only perpetuates the cycle of rinsing and repeating the same biases, harms, and injustices.

All the differences in power, too, can create moral distress for professionals & individuals alike who recognize the representational problems but do not hold the authority or resources to address them. A medical illustrator, researcher, educator, or clinician might have the ability to tell that existing materials inadequately represent the populations they are serving, while simultaneously being constrained by project requirements, funding, available datasets, and institutional decision-making.

What About…?

Although it would be nice to flip current practices on their head and move forward, there are other considerations to be made within the scope and practice of medical illustration production and use in medicine, education, research spaces, and beyond.

1. Professional Discretion + Current Approaches

Medical illustrators, researchers, clinicians, and publishers already exercise a level of professional discretion within the scope of their work. Not every piece of work needs to represent every population possible, and requiring there to be demographic representation in all situations possible could have the potential for becoming scientifically irrelevant, fiscally irresponsible, restrictive, or (overall) impractical.

2. Professional + Institutional Standards

We have already left institutions and individuals to make judgement calls around what images are produced and used, and that is what has led us to our current predicament. This doesn’t mean everybody has just gone ahead and done whatever they want, but there should be more solidified and even expectation-based decision-making around representation, demographic reporting, inclusivity within gallery collections, community-based participatory design that mimics CBPR ³ practices, editorial standards, and evidence-based decision-making about when demographic characteristics are paramount.

3. CBPR | Community-based participatory research (CBPR) is an equitable approach to research in which researchers, organizations, and community members collaborate on all aspects of a research project. CBPR empowers all stakeholders to offer their expertise and partake in the decision-making process.

3. Formal Regulations + Accountability

A really strong option within all of the ethical considerations would be to establish formal, cohesive regulations as well as accountability standards for when things go wrong. One of the problems with this, however, is that then you are looking at who gets to make these decisions. Are they the right people for the job? Then there is the issue, again, of tokenism, as well as “inclusion washing”. If the wrong person lands in the position of power, what will be continued in terms of harm, justice, rights, and responsibilities? What will be excluded? And finally, what happens when there is representation without nuance to that representation? All things considered, this perspective brings up multiple other ethical issues, creating the environment for indecision.

Purposeful Representation =/= Aesthetic Representation

Reconciliation matters. At this point, we know the direct effects that come from systemic racism and other structural biases that have continued these practices and, without fail, have left many with a lack of direction because of it. If we continue with the extremes of either do what you want or every image that’s produced or chosen has to fit a strict set of demographic requirements, then really, we will be stuck in a chasm. A happy medium does exist, though: intentional, evidence-based participatory representation. Instead of waiting until after a project is finished or picking something and going back after the fact, we could build in representation during the development & planning phases. Some questions we could ask include but are not limited to:

Who is this image for?
What population does the evidence actually describe?
Are demographic characteristics clinically and/or scientifically relevant?
Whose experience or body is being treated as the baseline within this scope?
Could exclusion of variation create any foreseeable harms?
Who should be participating in deciding appropriate representation?
Are we representing a population accurately, or are we slapping on diversity like a Band-Aid?

Putting Things Into Practice + Policy

All things considered, how can this be put into practice? There are many options, but there are a few that could be pathways forward. The first is establishing institutional standards at the organizational level that brings to the forefront equitable representation for medical, scientific, and educational illustrations & images.

The second follows the idea: with great power comes great responsibility. Increased representation will need further guidance to ensure steps are taken in following HIPAA protocols, informed consent practices, data governance, and other important considerations.

The third pathway could, and should, include disclosure statements. Making sure that when research is covering a particular topic, such as reproductive health, there is inclusion with the recognition that what is being communicated is representative of the direct population mentioned (i.e., women of reproductive age), but recognizing the other populations (i.e., birthing people) who are often not included in these studies. This would be especially important when it is not appropriate to diversify imagery due to lack of data, resources, reference materials, and so on *.

Socio-political Ramifications

In today’s political climate and landscape, the changes mentioned may become controversial. Things to consider, as mentioned before, are who will be the institutional authorities presiding over these decisions? With changes in DEI policies, how will this fall into line with those changes, and where may problems arise? Will there be enough resources to allocate, or will funding be an issue, as has been the case with other research and scientific projects? Other things to include here are related to issues such as academic freedom, professional autonomy, who gets to decide what the demographic categories are, who is representative of the communities themselves, and whether making formal changes to diversification of image production and usage will actually result in the redistribution of power, or if it will create further questions and ethical considerations in other areas.

The socio-political controversy that surrounds these approaches doesn’t eliminate the ethical obligation to address representational inequities. Instead, it reinforces the need for standards that are evidence-based, transparent, participatory, and adaptable in nature.

Why Don’t We? The Final Ethical Verdict

The TLDR version is clear: the continued underrepresentation of BIPOC, LGBTQIA+, and other marginalized communities within the scope of medical illustration poses the ethical challenge of the continuation of rights, harms, justice, and responsibilities being infringed upon, as the materials we choose to use and create contribute to, or combat, disparity within multiple institutions.

Based on the overarching analysis of these concepts, the strongest alternative to what we are currently doing is the development of organizational & professional standards, rather than relying solely on individual or institutional discretion. Medical illustrators, healthcare organizations, educational institutions, researchers, publishers, and the other affected populations should all share in the responsibility for deciding when demographic characteristics are relevant for projects and also how they should be mindfully used depending on that application. This would have the potential to also give individuals and institutions a way to handle moral distress by creating a clear-cut standardized approach in the recognition and remedy of representational inequities within the realm of medical & scientific/visual illustrations.

Combining this with a variety of other approaches that are rooted in the creation of standards, looking toward evidence, using professional judgement, involving the communities most affected, and holding institutions accountable is what, I believe, will lead us to a pathway for change and greater ethical efficacy in the future.

Sources + Research

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*Much of what is covered in this article has to do with marginalized communities in medical illustration, research, medicine, and beyond. It is recognized that science and research have misrepresented, lacked representation, or excluded these communities overall historically, and that a better way forward needs to be made to include these communities in conversations, research, and application. Everything included in this article is written with care and with the intention of moving the issue forward, so that one day there will not be communities missing from issues that impact them directly, but fail to recognize that fact.

Why Don’t We? A Look at Medical Illustrations, Ethically.