It’s hard to say which topics that bioethicists research and write about should be published in popular news sources and made available to the general public, rather than hidden by a paywall. I am certain that there are some bioethical topics that the general public will absolutely care nothing about and our writing about them amounts to indulging our colleagues. But I know some of the topics we write about, people outside of academia will have an interest. But which of these topics, I cannot say for sure. What I do believe is that the general public should have access to the work that bioethicists do that directly affects their health. I think this is even more dire when the topics are those that affect the least well off, such as racial disparities in health outcomes and access to health care.
Watching tv I came across a commercial for a documentary called The Color of Care. It opened with Oprah Winfrey lamenting that our health can be determined by our zip code. The commercial goes on to describe how people of color face lesser health outcomes and lesser access to health care than White people in America. It even includes the story of a Black family whose patriarch was denied care from 3 hospitals and then went home to die. The documentary about racial disparities in health care will appear on the Smithsonian Channel on May 1, 2022.
I “cut the cord” awhile ago, but I still pay for Hulu live, which gives me access to live tv and access to the Smithsonian Channel. But to have this access I pay about 8 times the cost of normal streaming services like Netflix and about 16 times the cost of other services like Apple+, Paramount+, and Peacock. The documentary has not been released so I haven’t seen it yet, but regardless of how great it is or is not, it’s important information that should be accessible to everyone. For scholars of this material, there is likely not much in the documentary that we don’t already know, but I’m willing to bet there is something in this documentary that other people don’t know and is very relevant to seeking health care in America. But similar to how academics publish important work that is then put behind a paywall, the information in the documentary is also put behind a paywall.
For many of the academics among us, publishing our work in popular news sources is not a priority. We either don’t know how (because we do not train students to write in a manner appropriate for the general public), it is not rewarded at our universities and medical centers, or we don’t prioritize it for other reasons. Public scholarship is often looked down up among academic as well. As a grad student when I would tell people I had public philosophy aspirations, I was told to do that work after I have completed the traditional requirements for promotion and tenure. One professor even asked me in disgust why I would ever have such aspirations. As a professor navigating the tenure track I am continuously told my public scholarship or even essays such as this one will not matter once my file is reviewed. It’s because academia has a model and stubbornly will not deviate from that model, despite the changing world and the ways we now access information. But because of its stubbornness, academia’s relevance to public life is threatened.
Similarly, television networks and documentarians have a model of releasing their content and a part of that model is making money. The Color of Care likely cost money to create and I’m sure the network and those involved would like to make a profit or at least recoup the costs they put into its creation. Everyone wants to benefit from their work. For those who do the hard work necessary to exposing the mechanisms and systems that create and maintain racial disparities in health, it is no different. The work can be difficult, emotionally draining, and personal for many us. I’m willing to bet the documentary was difficult, emotionally taxing, and personal for its creators as well.
But what responsibility do we have to make our work accessible to the public, in language and access? Do those of us who work on topics pertaining to race and health outcomes have a special responsibility to create public scholarship? Is this a responsibility that some of our bioethics colleagues don’t have? I’m not sure the answers. I just know that when I see documentaries like The Color of Care, or I see Angela Davis or Kimberlé Crenshaw giving Master Classes that are only available for a fee, I feel conflicted in the same ways I feel conflicted when I publish an article on environmental racism and it’s only accessible to people who have school library access or the money to pay to read it. The people who need it the most are the ones who have the least access to the information.
I will be up for promotion and tenure soon and I want my work to help me with this career achievement likely in the same way that creators of media content want their work to help their career and that can mean appearing in respectable, for-fee mediums. But what about people who don’t have access to this valuable content? What about the people who do not have the common Smithsonian channel? Those who do not have access to content that could help them navigate health care systems, recognize racism from their providers, learn to be advocates for themselves and their families; content that could help them survive?
I don’t have the answers, but I know our current model doesn’t work for the people who need it the most. And being an academic who wants the rewards of academia but also makes public scholarship a priority, it’s exhausting and often maddening.
Keisha Ray, PhD (@DrKeishaRay) is an Assistant Professor at the University of Texas Health Science at Houston, McGovern Medical School.