Did you know that World Bioethics Day was established in 2015? It is celebrated every October 19th. This year’s theme is “Non-Discrimination and Non-Stigmatization” – a topic ripe for, and in many ways reflecting, feminist approaches to bioethics.
(How) are you or your organizations acknowledging the day? Let us know in the comments!
People research trans feminist bioethics who do archival work should check out this great new opportunity, funded by the Mellon Foundation.
From project co-director Hil Malatino: The project, “Widening the Arc of Trans History: Archival Research for Public Storytelling,” will support a cohort of 8-10 scholars over a period of 3 years as they work in trans-related archives and draft articles and first book projects rooted in that work.The cohort will be supported by a team of co-directors (myself, Myrl Beam, and Sam Tenorio) and will receive four fully funded weeks of archival research in trans-related archives, a $1000 stipend for each year of participation, $5000 towards a development editor for a first book project, access to workshops and seminars on archival methods, trans archives, publishing, public storytelling, and non-fiction craft, as well as ongoing support for writing and revision.You can learn more about the project and apply here – https://bit.ly/TransHistoryApplicationThe deadline is January 12, 2025.
On the blog we’ve previously shared a sneak preview of the American Society for Bioethics and Humanities (ASBH) plans for the Feminist Approaches to Bioethics (FAB) Affinity Group. The upcoming session features one of the blog co-editors! Now we’re providing a bit more overview of not only the session (as well as how ASBH members who are not going to be in-person this year in St. Louis can join it) but also about the new FAB Affinity Group co-chairs who are leading the group for a three year term 2024-2026 and plans they have in store for group during this time. In lieu of a scholar spotlight this month, we’re feature two scholars and the FAB Affinity Group.
Read on to learn more directly from the co-chairs who wrote this guest post below.
As the new co-chairs of ASBH’s Feminist Approaches to Bioethics affinity group, we (Lindsey Grubbs and Devora Shapiro) are excited to preview our session at the 2024 ASBH conference in St. Louis, and to share a bit about our plans for the next three years.
Lindsey Grubbs is an assistant professor in the Department of Bioethics at Case Western Reserve University, where she teaches health humanities and bioethics from the BA to the PhD and MD level. Her research into the literary history and contemporary ethics of medical conditions that lack objective markers and thus rely on too-often-ignored patient testimony (sometimes called “undocumented” or “invisible” disabilities) has been published in venues including Literature and Medicine, the Journal of Medical Humanities, the Cambridge Companion to American Literature and the Body and the American Journal of Bioethics: Neuroscience among other venues.
Devora Shapiro is Associate Professor of Medical Ethics at Ohio University Heritage College of Osteopathic Medicine. She is a philosopher and clinical medical ethicist with research areas including medical trauma and medical gaslighting, intersectional approaches to diagnosis and treatment, experiential knowledge and medical practice, and clinical ethics topics such as ethically engaging “complex” patients. Her work has been published in The Hastings Center Report, The Journal of Clinical Ethics, CHEST, and International Journal for Feminist Approaches to Bioethics.
We are excited to kick off our term as co-chairs with an absolutely fabulous affinity group session at this year’s ASBH conference, which will take place from 1-2 PM CST on Friday, September 20th. The session will take the form of a panel of short talks at the intersection of feminist and disability bioethics. Noting the large degree of shared membership between FAB and the disability ethics affinity group, the intellectual connections between the approaches, and the strengths of our members in this area, we believe a panel on this topic will be of interest to FAB members. We have a great group of speakers: Kara Ayers will speak on “Reproductive Justice at the Intersection: Feminist and Disability Ethics,” Alison Reiheld will present “’This world isn’t big enough for the both of us’: Fatness, disability, and making spaces,” and Jada Wiggleton-Little will deliver “Normalizing Bodies in Pain.” We plan to advertise the session widely and hope to attract a few new potential members. A zoom option will be available for members who are unable to attend the conference in person – if you’re an ASBH FAB member, you should have received an email about this, and will get a reminder prior to the conference!
In addition to events at ASBH, we plan to hold 2-3 zoom events per year in order to build community and share thoughts on teaching and research. One of the first things that we did when we assumed leadership of the affinity group was to distribute a survey to get to know our members and assess their interests for the coming years. We learned a lot, both about the wide range of members’ research interests and professional roles, and about the kinds of events that people would like to see. According to our survey, the most popular format for these events is a discussion with authors of recent significant publications (garnering 88% of votes), followed by works-in-progress flash talks (68%) and themed research panels (64%). We intend to organize events of each of these types over the course of the next year.
We look forward to creating spaces, both digitally and at ASBH, for continued connection and the sharing of ideas. We have also established a listserv for the group that members will need to opt into, which we hope people will use to plan conference panels, share recent publications, and build feminist community (again, check out your recent email for an enrollment link and look out for reminders!). Over the next three years, we also hope to continue to plan events that intersect with the interests of other affinity groups, building connections that can help to strengthen coalitions of bioethicists who prioritize issues of justice and equity.
Check out the fantastic lineup of articles in the latest issue of IJFAB!
We are very excited to announce details on the Feminist Approaches to Bioethics affinity group session (organized by Lindsey Grubbs, Case Western Reserve University) at ASBH 2024, which will take place from 1-2pm CST on Friday, Sept. 20. We have a panel of three speakers making remarks at the intersection of feminist ethics and disability ethics:
Please come to hear these fabulous talks – and bring a friend! If you are a member of the affinity group and are not able to attend the session in person, we plan to stream it over zoom to make it as accessible as possible. The link for this session will be https://cwru.zoom.us/j/95313150743?pwd=O9aBQudjgbSBai1APb1CQKKEMxRdHI.1.
We would also like to plan a more informal time for us to gather at the conference, and are currently working on a 5pm happy hour. More to come as the conference draws nearer! ——
In May of this year, Taylor & Francis (which also owns Routledge) sold access to its research to Microsoft for about $10million. Taylor & Francis’ parent company confirmed to Bookseller that “it is providing Microsoft non-exclusive access to advanced learning content and data to help improve relevance and performance of AI systems”. The $10 million will cover initial access, with additional recurring payments of undisclosed sums to continue over the next three years. The announcement strikes a nerve with academics and other authors worried about the possibility of their published works being sold as training data for AI systems. As training data, these published works will serve as the raw materials that large language models draw on in order to respond to a given prompt based on statistical predictions of the most likely association.
Authors were not consulted about this deal, nor were they notified of its signing. Most learned via word of mouth after the fact. This eliminated any meaningful opportunity to opt out and exclude one’s own work from the deal. Taylor & Francis told Bookseller that they remained committed to “protecting the integrity of our authors’ work and limits on verbatim text reproduction, as well as authors’ rights to receive royalty payments in accordance with their author contracts”.
And yet, at least in IJFAB Blog Co-Editor Mercer Gary’s experience, efforts to negotiate the parameters of AI use in academic publishing contracts have thus far taken place on shaky ground. Though language protecting authorial rights and securing compensation for profits made as a result of use of the work for AI training purposes is circulating, legal teams at publishing houses have been reluctant to adopt it. Norms and policies surrounding the issue have yet to be widely established, leaving the state of play somewhat uneven and unpredictable. For instance, while Taylor & Francis has yet to assure its authors that they will receive compensation for their work’s contributions to AI training, personal communications with Oxford University Press have indicated that any future sale of research material for AI training purposes would be covered by electronic subsidiary rights royalties clauses in publishing contracts.
The Author’s Licensing and Collecting Society is currently conducting a survey about two proposed measures for protecting authorial rights. See more of ALCS Chief Executive Barbara Hayes’ remarks on coming changes with AI in publishing.
We encourage continued discussion and brainstorming in the comments about strategies for feminist bioethicists to pursue in negotiating authorial rights and protections over AI use.
Bioethics / medical ethics folks, and people who work on reproduction, obstetrics, and gynecology may want this on their radar: Black women with sickle cell anemia pressured to undergo sterilization. It’s clearly not forced sterilization, and more like coerced sterilization caused by deliberate misinformation and time pressure. It definitely constitutes an attempt to manipulate patients into making decisions for really suspect reasons of the doctor’s own, not the patients’ own. Here’s a quick link to learn more, with an illustrative quote, below: https://nonprofitquarterly.org/sterilization-of-sickle-cell-patients-is-part-of-a-long-history-of-abuse/?fbclid=IwZXh0bgNhZW0CMTEAAR0NjQDJ46FiyedUcCmrJZAJy5p5nDrAUXzKUvj5-ZWLFUsj-DqufeKobvs_aem_kd9tLJcg9bcAj5e4YEZG2Q
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“The STAT piece, “Coercive Care: How Doctors Are Pressuring Sickle Cell Patients into Unwanted Sterilizations,” features the harrowing stories of women who now regret their decision to end their ability to have a child in the face of coercive medical practices. The cases allege that women were pushed into making abrupt decisions about their reproductive lives, where the complications of pregnancy for women with SCD were presented as almost certain death.”
FABGab Episode 2 is now live with Prof. Wendy Rogers talking about her work with Jacqueline Dalziell on “What Feminist Bioethics can bring to Synthethic Biology” available in Volume 16 Issue 2 of the journal here. It’s fascinating paper applying feminist analysis to specific cases in synthetic biology to think about relationships, commitments/promises, justice and power. Give it a listen here and let us know what you think.
This June the International Association of Bioethics (IAB) and Feminist Approaches to Bioethics (FAB) is meeting at the World Congress of Bioethics/FAB Congress in Qatar, where the new IAB President was announced to be Dr. Caesar Atuire. Dr. Atuire is a philosopher and bioethicist from Ghana working inter-continentally as the Ethics Lead for the Centre for Tropical Medicine and Global Health at the University of Oxford, as an Associate Professor of Applied Philosophy at the University of Ghana, and as an affiliate Instructor in the Department of Bioethics and Humanities at the University of Washington.
Dr. Atuire brings expertise in global health and ethics, decolonizing bioethics, and bridging conceptual and empirical bioethics, among other topics of research and scholarship, to leading the IAB.
Congratulations (and thanks) to Dr. Atuire for taking on this leadership role.
The COVID-19 pandemic brought the already growing industry of telemedicine into most of our phones, homes, and healthcare routines. Telemedicine–or the connection of patient and physician by virtual means such as videocall or secure messaging–has become a key lifeline for extending service across the gaps of American healthcare. In rural areas especially, physician shortages and hospital closures make accessing in-person healthcare challenging in the best of times. Add to that the travel restrictions, resource shortages, and increased clinical risk of a pandemic and we get conditions ripe for telemedicine’s explosion. Less discussed, however, are the forms of in-person labor on which even this virtual medical care continues to depend. Overlooking the necessary support offered by non-physician healthcare workers, unpaid home and community caregivers, and patients themselves will not just undermine the success of telemedicine – it will further erode the basic level of care undergirding society as a whole.
The promises of telemedicine are many: although increasing access to healthcare serves as a more altruistic motivation for the growth of telemedicine, the technology’s potential to decrease spending and boost efficiency is also compelling. Some have gone so far as to argue that telemedicine should become the default for routine medical concerns, leaving in-person visits as “Plan B.” Such a system, they argue, would be particularly beneficial for “patients with the most health care needs — the 5% that account for 50% of costs” by bringing “as much of the necessary care and social support into the patient’s home” (Duffy & Lee 2018, 8). Other healthcare researchers have projected that removing the medical encounter from the hierarchical environment of the clinic and (somewhat) obscuring patients’ racial and gendered presentations, telemedicine could even thwart implicit bias. (It’s worth noting, however, that this possibility depends on the equitable distribution and uptake of telemedicine, which has not been achieved.) According to bioethicist Jordan Parsons, both equity and efficiency make the adoption of telemedicine an imperative, so long as quality of care is not sacrificed.
Much of the concern articulated about telemedicine surrounds its impact on the doctor-patient relationship. Even if we grant that a physician can effectively diagnose and treat from a remote location – and it’s not clear that this is true across the board – the physical distance and technological mediation introduced by telemedicine present challenges for how doctors express compassion and build trust with their patients. Given that trust and compassion between doctor and patient are tied to ethically successful clinical encounters as well as better health outcomes, we would rightfully object to telemedicine if it placed these goods in jeopardy. But if our response focuses too much on improving the relationship between the patient and the remote physician, we risk obscuring and under-supporting the hands-on care that makes telemedicine work.
For instance, the hub-and-spoke model of telemedicine relies on outpost clinics with full staff who help virtually connect patients with physicians located elsewhere. Not only does the outpost clinical staff perform the clerical and administrative labor necessary to keep the operation running, they also perform physical tasks on the bodies of patients: a certified nurse’s assistant slides an inflatable cuff up a patient’s arm to measure her blood pressure; a physician’s assistant holds another’s foot in his hand to palpate painful joints. The physical proximity of support healthcare workers (HCWs) to their patients requires them to assume responsibilities that cannot be fulfilled by the distant physician. If bad news, like a poor prognosis, is given via videocall, the support worker present with the patient turns into the proximate other to whom the patient can respond in grief or anguish. These physical and affective exchanges, integral to the delivery of care, are neither eliminated nor fulfilled by the virtual physician but must instead be performed by another, likely more precarious, worker.
In the case of at-home telemedicine, the clinic does not so much recede into the background as it instead creeps into the household. Home-based visits are particularly common for the remote monitoring of chronic conditions, especially conditions that limit the patient’s mobility. Among the effects of “bringing the clinic home” is the involvement of family members and other unpaid caregivers in the medical visit itself. Whether assisting in the physical maneuvers of the exam or being present as emotional support, the at-home partner becomes the patient’s most direct source of care. While serving in similar capacities as the non-physician HCWs in the clinic, informal caregivers within the home typically lack medical training as well as labor protections, social status, and compensation.
Neither of these instances of hands-on care, whether provided by non-physician healthcare workers, informal caregivers, or patients themselves, is necessarily problematic. Community caregiving with telemedical support, for instance, may offer more interpersonal connection and context sensitivity than the average hospital. Encouraging self-care, moreover, may increase patient autonomy. But telemedicine’s way of delegating care to others does become a problem where it makes that delegation invisible and fails to provide resources to those doing the material work of caring for bodies. Without proactively distributing caring responsibilities and supporting the provision of care, experience has shown that the slack will be picked up by the most precarious among us: unpaid care labor disproportionately falls to poor women, both nationally and internationally, and is a significant driver of economic inequality. This maldistribution is both unjust and unsustainable, jeopardizing the wellbeing of the careworkers themselves and the adequacy of the care given.
In addition to the burden on individual precarious care workers, both paid and unpaid, neglecting telemedicine’s delegation of labor has serious consequences for society as a whole. Recently renewed conversations in both crisis management and political economy point to the care sector as the ground on which our social world is built. Without direct care for our physical, psychological, and social needs, no other human projects are possible. When we undermine our collective ability to provide for basic needs – as we do when we focus on technological development at the expense of hands-on care – we become, in Nancy Fraser’s words, like the tiger who eats its own tail.
This isn’t to say that we should give up on telemedicine, and its presence in our lives will certainly outlast the pandemic. But the expansion of telemedicine must foreground financial and social support for those providing the direct, hands-on care that remains essential even in our increasingly virtual context.
For related arguments, keep an eye out for my first book, The Limits of Care: Making Feminist Sense of Technology Relations, forthcoming with Oxford University Press.
This is a draft of the FAB 2024 Schedule. It is a final-ish draft which is always subject to a few changes. Please get in touch with Jackie and Anna with any questions…and we will try to do our best.
Link to FAB2024 program (subject to change)
For our next installment of our Feminist Bioethics Scholar Spotlight Series, we have Nicole Fice, PhD, Assistant Professor at Trent University. Read on to learn more about Nicole and her work.
My first undergraduate course in philosophy was an introduction to moral and political philosophy, and immediately I was hooked. My focus on bioethics didn’t come until later in my undergraduate career, when I took a fourth-year advanced topics course on conscientious objections in medicine at Trent University with Dr. Michael Hickson. My paper for that course examined whether parents who refuse pediatric vaccines on behalf of their children where a kind of conscientious objector. I knew back then I was interested in graduate studies in philosophy, so I used that paper for my applications to graduate programs.
The ethics and politics of vaccine hesitancy stuck with me—in my MA research project and parts of my PhD dissertation I continued to grapple with philosophical questions related to vaccine hesitancy and became especially interested in what a feminist perspective could bring to the issue. My thoughts on the topic have changed over the years and continue to evolve, but it’s fun to look back and see that that fourth-year undergraduate paper was really my bioethics origin story! My work on vaccine hesitancy pushed me to focus on public health ethics, and now I teach that same fourth-year advanced topics course on public health ethics.
Image of Nicole Fice, sitting on a tree stump and holding a bird in the snow, courtesy of Dr. Fice.
I was recently awarded a small grant to begin a new project on the ethics of homelessness, so that is definitely what I am most excited about at the moment! Interestingly, it is an issue that hasn’t received much attention from philosophers or bioethicists, but I think it raises lots of challenging questions, including ones relevant to public health ethics.
Right now, the project is divided into two parts: the first part is writing a paper that responds to some recent philosophical work on homelessness and autonomy, which I’ll be presenting at the North American Society for Social Philosophy. The second part is a more public-facing project that analyzes the ethics of a By-law in my city that essentially criminalizes tenting in public parks, which primarily impacts those experiencing homelessness.
My goal is to produce a report for local service providers and advocacy groups in the city that argues this particular By-law, and others like it, are morally problematic for a variety of reasons. For this part of the project, I’ve been meeting with awesome organizations like One City Peterborough that provide services and do a lot of advocacy surrounding issues like homelessness, so I am excited to continue to learn from them and collaborate on some public events on the ethics of homelessness in my city.
When I have time, I love to craft! It helps to keep my hands busy and exercise my creativity. Knitting, embroidery, and pottery are among some of the crafts I’ve learned. Among those, I think pottery is my favourite, although it is the one I find the most difficult and the one that requires the most technical resources. During my PhD, I was a member of a community studio where I learned to throw pottery on the wheel. Getting my hands dirty was a great way to relieve some stress! Unfortunately, I haven’t joined a new community studio since moving to a new city, but I have been trying to keep up with some of my other crafts like knitting. I hope to return to pottery soon! Image of pottery cup and teapot courtesy of Nicole Fice.
I recently read Barrett Emerick and Audrey Yap’s new book, Not Giving Up on People: A Feminist Case for Prison Abolition. Although they are writing about prison abolition, I saw many of their ideas and arguments as being relevant to both theoretical and practical issues I focus on in my work on public health ethics, including homelessness. One aspect of their book that made me think a lot was their discussion of moral solidarity and moral abandonment, terms they draw on from philosopher Jean Harvey. They describe moral solidarity as “taking up an attitude of respect and concern for other people; it is fundamentally about recognition, perceiving and understanding them in their circumstances, and meeting them where they are” (27).
This conception of solidarity is interesting to me given that many others (including Meena Krishnamurthy and Angus Dawson and Bruce Jennings) have argued that solidarity of some kind ought to be an essential component of theorizing in public health ethics. One thing I’m interested in is comparing the accounts of solidarity that have been given in the context of public health ethics and comparing it to various public health issues to think about which account is most appropriate and why.
Overall, what really stood out to me in Emerick and Yap’s work is their conception of moral abandonment. Following Harvey, they describe moral abandonment as the alternative to moral solidarity, which “[leaves] the victim of injustice further isolated, degraded, and diminished within the larger moral community” (28). In their book, they argue against moral abandonment and the ways in which incarceration institutionalizes moral abandonment because it is “a way of giving up on people as a society” (88).
While I don’t have the space to fully summarize their arguments or develop my views here, I want to mention a few things I continue to think about in relation to their arguments on moral abandonment. The first is an experience I’ve had when teaching my fourth-year class on public health ethics. In that class, we have one week that covers homelessness and another week that covers harm reduction and drug addiction. I think these are the two most controversial topics I’ve ever taught—and I teach a lot of controversial topics, including oppression, privilege, pornography, etc.! I think of these topics as controversial given some of the reactions I get from (some, not all) students. A few students, when discussing the ethical issues related to homelessness or drug addiction, seem to have an attitude that indicates they have given up on people who are homeless or people who use drugs. Emerick and Yap’s book, along with Harvey’s work, helped me understand that attitude as expressing a kind of moral abandonment, which is largely informed by pervasive social stigmas and negative stereotypes about people experiencing homelessness or people who use drugs (who are, going back to Emerick and Yap’s focus on incarceration, often criminalized).
This relates to a second thought I had reading their book, which is how to address such attitudes when they arise, especially in my own teaching. This is something they discuss in later chapters of their book, too. For my own purposes, one thing I might test out next year is assigning some of Emerick and Yap’s book to read when we cover homelessness and drug addiction. A final thing I continue to think about is how public health ethics generally and public health policymakers in particular might have to address moral abandonment.
One question I had was whether are there ways in which public health or other social policies institutionalize moral abandonment in the same way incarceration does. This seems plausible to me: some examples might include the By-law I mentioned above, which essentially criminalizes homelessness. If the By-law in part functions merely to evict people sleeping in tents from public parks and does not offer meaningful alternatives to better their situation, it might look like the city is giving up on people experiencing homelessness. Should public health experts and policymakers argue against such approaches? What would advocating for shifts away from moral abandonment in public health and social policy making look like? Taking inspiration from Emerick and Yap, I think these questions are ones I’ll continue to think about and work on moving forward!
