Artificial Intelligence and the Medical Humanities: The Ethical Concerns of Data Commodification in Medicine

by Alissa Williams, HI Program Assistant

Dr. Kirsten Ostherr, the Gladys Louise Fox Professor of English, Director of the Medical Futures Lab at Rice University, and an Adjunct Professor at the UT-Houston School of Public Health, gave her talk, “AI and the Medical Humanities: An Emerging Field of Critical Intervention,” at the October Health and Humanities Research Seminar. Discussing the past, present, and future role of artificial intelligence (AI) in medicine, Dr. Ostherr argued that AI and related “datafication” practices are coming to constitute a new social determinant of health, a term that refers to “conditions in the places where people live, learn, work, and play [that] affect a wide range of health risks and outcomes.” (Datafication is the process of collecting information about something that was previously invisible and turning it into data.) Dr. Ostherr’s lecture was an enlightening take on the potential positive impacts of AI, but also a warning as to how dangerous its reach can become if it goes unchecked. The seminar began with a chronological mapping of AI’s appropriation into the medical field and ended with a call to action for scholars across all disciplines, as well as the public, to participate in the advancement and regulation of AI as it relates to medicine and health.

Prior to 2015, the application of AI in the medical field involved “a lot of speculation,” but “little action” according to Dr. Ostherr. While AI was initially thought to be a threat to the job security of health care professionals such as radiologists, some now see it as a potential tool for making health care more efficient, more effective, and more accessible to historically neglected populations. But AI, especially when combined with datafication, also poses potential harm to patients and others. Dr. Ostherr argues that the health data about themselves that individuals both purposefully and inadvertently make available on social media platforms, websites, and personal wellness devices (e.g., Fitbits) can be commodified for exploitative purposes, largely without the permission or even knowledge of the patient whose data is being commodified. While research into the social determinants of health can be used to promote health equity and health justice, it can also be used to reinforce existing forms of bias and exclusion and even create new ones. For instance, companies can use data about the neighborhoods people live in or even their degree of political participation to deny them health insurance, charge them more for it, or even deny them employment.  Rather than using data to improve people’s health and health care, companies can use it to manage their own financial risks. In other words, instead of making healthcare and its infrastructure more accessible to all individuals, including those belonging to historically marginalized groups, AI and datafication can exacerbate the gaps that already exist by amplifying the biases that helped create these inequities.

On the other hand, however, Dr. Ostherr mentioned two websites in her talk, Hu-manity.co and Doc.ai, that have begun to use AI as a means of enabling patients themselves to monetize the sharing of their data under privacy constraints that the patients choose. Although these websites have not yet garnered a prominent following, they serve as examples of the potential AI has to help develop more positive and transparent ways of using individuals’ health data. Dr. Ostherr believes that the health humanities have a crucial role to play in determining how AI and other modes of information technology are used in the fields of health and medicine. Dr. Ostherr emphasizes that this is indeed a collaborative effort that needs to take place between disciplines in order to ensure the needs of the public are met from all angles with diversity in mind.

Who Can Tell What Story?: Ethical Concerns in Theatre Education

Assistant Professor of Instruction in the Department of Theatre and Dance Dr. Sara Simons led the Faculty Fellows seminar held October 4th, beginning with a simple question: who can tell what story? As an educator of future theatre teachers, Dr. Simons noted that her interest in investigating the classroom came from both theoretical and practical concerns. For Simons’ students, the ethics of who can best present a story and whether stories can be told across identity markers quickly become issues of importance in high school theater classrooms. Simons’ students value exposing their own future students to plays and stories from a diverse range of writers and voices, yet many also question how to teach such perspectives. But such conversations are not limited to theatre education, as many Fellows noted.

Simons led the seminar through a series of kinesthetic exercises, many of which she teaches in her own classroom. She began with exercises adapted from Augusto Boal’s Theatre of the Oppressed canon, asking Fellows to follow a series of commands (walk, stop, jump, say your name), then to reverse those commands–to walk when Simons told the group to stop, to jump when Simons asked the group to state their names, and so on. The Fellows debriefed after the activity, noting the activity established new meanings and rules, forcing each of the participants to think before they acted. Simons framed this activity as a way for her to teach students the process of unlearning their assumptions, beliefs, and automatic responses–something, she noted, that is not only continual, but often bumpy.

Simons asked the group frequently to describe what they achieved in the activity, providing the participants an opportunity to reflect on their teaching as well as on their assumptions around teaching texts from authors of different backgrounds from their students (or their own), among other things. Simons noted that theatre education frequently positions theatre as both “a mirror and a window,” representing both the audience’s experiences and experiences that may never have had. But that view of theatre can be complicated by issues of who is permitted to tell stories of marginalized people, and who is represented in theatre as a whole.

Simons instructed Fellows to assemble into small groups to discuss various hypothetical scenarios around storytelling, authenticity, and representation. Fellows debriefed on the assignment as a group, discussing the ethics of writing or teaching stories from different societal positions and perspectives. Many Fellows noted that academic work in a variety of fields involves working in communities outside of their own, requiring researchers to consider how they are accountable to the communities they write about and what materials they need to elucidate or contextualize. Participants also discussed considerations of audience. In theatre, Simons noted, directors and producers frequently need to consider who the show is for, and whether they intend to expand the audience’s horizons or depict the audience’s own lives–the mirror, or the window. Fellows concluded that academics, writers, and others in creative professions often have to make risky moves to promote empathy in their audience, or in their students. Thus, an understanding of the power dynamics at work–in a piece, a production, or in culture broadly–are essential to teaching theatre, and to teaching and writing as a whole.

The seminar closed with each participant stating their final, one word summation of the discussion, providing each Fellow an opportunity to reflect on what they took from the session. Answers ranged widely, but many stated words like authenticity, empathy, context, and other broad topics, making connections to the concerns of past seminars.

The Way She Was: Writing Eve Merriam’s Life Story

The Faculty Fellows seminar on September 26th was led by Julia Mickenberg, Professor in the Department of American Studies. Building from her previous work on leftist and radical politics in children’s books, Dr. Mickenberg presented a collection of materials that represents her work-in-progress: a book on American writer Eve Merriam. Merriam published a wide range of work from the late 1950s into the late ‘70s, including plays, poems, essays, children’s books, and more, with surprising speed.

Indeed, the breadth of interests, topics, and expressive forms found in Merriam’s work is part of what makes her so fascinating to Mickenberg. Across her career Merriam participated in a number of different literary and political circles, tying together a number of Mickenberg’s own interests, for instance in radical cultures, feminism, children’s literature, and the children’s liberation movement. (These interests are explored in Mickenberg’s books, Learning from the Left: Children’s Literature, the Cold War, and Radical Politics in the United States (2005) and American Girls in Red Russia: Chasing the Soviet Dream (2017).) According to Mickenberg, Merriam is likely best remembered as a children’s poet, but her influence was felt through a variety of contexts, and a variety of genres. Her legacy was further complicated by the 1973 Barbra Streisand film, The Way We Were. Merriam partially inspired screenwriter Arthur Laurents’ take on the Streisand character, Kate Morosky, providing Mickenberg an unexpected inroad to writing about Merriam herself.

Participants in the seminar were amazed at the amount of ground Merriam covered over the course of her life, creating unexpected communities through her work and presaging the feminist work of Betty Friedan in her political essays from the late ‘50s. Many suggested that readers might similarly want to engage with the fascinating diversity of Merriam’s work, and advised Mickenberg to consider collecting some of Merriam’s writing into a separate edited volume. As Mickenberg noted, Merriam’s “The Diary of a White Liberal Racist” seems remarkably relevant to discussions today about some of the subtler forms that persistent racism takes, including institutional racism, implicit biases, and the benefits that even liberal or progressive white people often enjoy at the benefit of people of color.

Mickenberg’s own project is still taking shape and she is exploring different approaches to telling a life story, including the question of to what extent she wants to focus on narrating and analyzing Merriam’s own life and work and to what extent she wants to use Merriam as a lens for discussing some of the broader historical and cultural developments in which she participated. An enticing facet of Merriam’s story is how many major figures in diverse fields across a long stretch of time she had dealings with, ranging from W.E.B. DuBois to Norman Lear!

Seminar participants, including several who had written biographies or, in the case of Paul Stekler, made biographical films, brainstormed with Mickenberg about approaches she might take to organizing her materials and deciding upon a through-line for the story she wants to tell. Participants suggested focusing individual chapters on different genres Merriam had written in or on particularly resonant creative experiences she’d had. One participant suggested that  a chapter might be devoted to the  community created around The Club, her Obie award-winning play, which debuted in 1976. Mickenberg has interviewed the play’s producer Mary Silverman, and through the interview, she discovered how tightly knit the cast became during the play’s premiere at the Lenox Theater in the Berkshires. The actors bonded over a mutual connection with Merriam’s script, a satirical take on men’s clubs featuring an entirely female cast. Mickenberg closed the seminar by showing a series of clips from Merriam’s work in television, including a TV spot for the bicentennial anniversary of the American Revolution, and All That Glitters, a 1970s TV sitcom, directed by Norman Lear, parodying men and women’s roles by entirely reversing them. Seminar participants also discussed how writers include themselves in their scholarly work as narrators and as characters. Though including oneself in a biography or paper can be prove risky, participants agreed that Mickenberg’s reference to her research process added something valuable to her paper.

Getting Back to Abnormal: Politics, Narrative, and Rhetoric in Filmmaking

Dr. Paul Stekler, Professor in the Department of Radio, Television, and Film and the Wofford Denius Chair in Entertainment Studies, led the Faculty Fellows seminar on September 19th, beginning with a short overview of what brought him to politics, and more specifically, what brought him to making documentaries like Getting Back to Abnormal (2013). Dr. Stekler credited his family for his lifelong interest in politics, stemming back to conversations with his grandfather on Franklin Delano Roosevelt and his first job working for a Republican congressman, among other things. Stekler has worked in a variety of political contexts since then, from the George McGovern campaign in 1972 to working with pollsters from The New York Times. His family spanned both sides of the aisle–his father, a Republican, helped him to get his first campaign work, while his mother is a lifelong Democrat. Stekler earned a doctorate degree in Government from Harvard University, and after working in academia as a political scientist for a number of years, he found his calling as a full-time filmmaker with a focus on politics.

Stekler showed the Fellows a series of clips from an NEH-funded film he made in 2000, titled George Wallace: Settin’ the Woods on Fire. The film allowed him, he explained, a new context in which to apply his political knowledge and background, but the challenge was presenting this information in a narrative appropriate to a broader audience. George Wallace, for Stekler, represented a transition point for American politics, and a documentary presented a unique opportunity to bring his conversations within academia into the mainstream.

Participants asked Stekler about his methods, from how he finds his subjects and characters to his methods for mapping the trajectory of a documentary film. Stekler emphasized narrative fundamentals, such as conflict, but he also noted the importance of finding an accessible subject–someone who would not only be open with the filmmaker, but who would be compelling to watch on the screen. Though crafting a story is of the utmost importance, Stekler explained that as a documentarian he seeks to balance storycraft, accuracy of representation, and visual interest. Several Fellows pondered what exactly could be told best in the context of documentaries and other projects for public audiences, and what academic and discipline-specific projects offers alongside more popular works. Participants agreed that although some work can be translated into popular projects, teaching also offers a venue for transmitting one’s research to the public.

Participants also raised questions about Stekler’s development as a documentarian. Much of his knowledge about filmmaking, and more generally, narrative, Stekler said, was learned through collaboration with other creatives. Stekler credited the producer of Eyes on the Prize, one of his first films, for teaching him some of the fundamental aspects of filmmaking–mainly, that the goal was to keep the audience watching. Overall, he admitted, he learned much of what he now knows about story from experience.

The conversation turned more specifically to Getting Back to Abnormal, and the variety of New Orleans documentaries that had been made in the aftermath of Hurricane Katrina. Having lived in New Orleans himself, Stekler explained he had found many documentaries of post-Katrina New Orleans lacking what he identified as the city’s true character. Stekler told the group that he and his collaborators wanted to tell the story of whether or not New Orleans had changed, capturing something of what he saw to be New Orleans’ contradictory nature. Stekler shared that at the Controversy & Conversation screening of the film the week before at the Austin Public Library, he had the chance to rewatch it with a number of engaged audience members. During the discussion he led, a member of the audience asked what the film would look like if he had made it in 2019. Although Stekler felt that his connections to the city have grown more distant, making him “not the right person” to make a present-day version of the film, he believes that the sway between the joys and sorrows of the city are unlikely to have changed.

Looking towards the future, Stekler stated he was working to raise funds for a film on the McDonald Observatory and astronomy–moving from the politics of the city to the stars.

See Dr. Stekler’s career reel here.