King’s Words on Health Injustice: what did he actually say?
Charlene Galarneau

Editor’s Note: This blog is a short version of the issue that author and feminist bioethicist Charlene Galarneau wrestles with in her article “Getting King’s Words Right” in the most recent issue of the Journal of Health Care for the Poor and Underserserved. For a more accurate image meme to circulate, scroll to the bottom for one that IJFAB Blog has made for just this purpose.

This image shows the most widely circulated version of the King quote. But is it accurate?

You may have read these commonly cited words of the Rev. Dr. Martin Luther King Jr.:

Of all the forms of inequality, injustice in health care is the most shocking and the most inhumane.

Or you may have read a slightly different quote that says, “injustice in health” rather than “in health care.”

The distinction between health and health care is crucial, and especially so as it relates to injustice. And so, I wondered, which did King actually say?

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The public health response that drug addiction should always have gotten is coming into play for opioids in a way it never did for crack
Editor

Whenever there is a disparate social response to a problem that afflicts one group of people relative to a problem that afflicts another, it is worth asking why. Such questions are not asked to imply that no one should  get help, nor to imply that the current group should not be helped.  Rather, we ask them to urge that in the future all persons get help and to understand the social forces that result in such disparities.

When it comes to treating addiction as a public health problem, the disparities in question are health disparities. PBS NewsHour in the US recently ran a short piece on the disparities in how crack cocaine abuse was treated when it largely affected African-American communities, and how opioid abuse is being treated now that it is heavily affecting white communities. As the introduction to this piece says.

Faced with a rising national wave of opioid addiction and its consequences, families, law enforcement and political leaders around the nation are linking arms to save souls. But 30 years ago, it was a different story. Ekow Yankah, a Cardozo School of Law professor, reflects on how race affects our national response to drug abuse.

Historically, drug abuse in the US has been criminalized. Now, we see a much-needed flourishing of drug courts which specifically are empowered to offer rehabilitation and treatment instead of jail time. As the Kaiser Family Foundation has noted in this handy chart with data from the Centers for Disease Control, most deaths from opioid overdose are now amongst white Americans (in the US, whiteness often is taken to include hispanic/latinx persons, though this chart separates them out).

This chart shows that within the US, deaths due to opioid overdose number 33,450 for white non-hispanic persons, 4,374 for black non-hispanic persons, 3,440 for hispanic persons, with a total of 42,249

The KFF chart can generate a graph over time, with data going back to 1999 (20 years, not the 30 that the PBS Newshour essay discusses, but illustrative nonetheless). Note the steady rise in overall opioid deaths (the top line with diamonds), driven almost entirely by a steady increase in the deaths of white non-hispanic persons (the second-from-top line with circles) while deaths amongst Hispanic and Black, non-Hispanic persons have remained steady with a very mild uptick only in the last few years.

What bearing does this have on why the public health and political responses to drug use in these two communities has been so different?  Check out the PBS NewsHour video for more (transcript is available at the link).

 

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April 15 Deadline is coming up for submissions to FAB Congress/World Congress of Bioethics in India
Editor

Editor’s Note: If you have work in feminist bioethics, broadly construed, please submit to FAB Congress, meeting in conjunction with the World Congress of Bioethics later this year in India. These opportunities to be with the global bioethics community and do our kind of feminist work together only come once every two years.  Vikki Entwistle, one of the organizers, has a few words for you all as the April 15 deadline approaches!


FAB 2018 – looking forward to our World Congress

The International Network on Feminist Approaches to Bioethics (FAB) will hold its 12th World Congress (FAB 2018) at St John’s College, Bangalore, India, from December 3rd to 5th 2018.

This image shows a map of India with St. John’s Medical College in Bangalore, India, highlighted.

The FAB 2018 theme is ‘Confronting Inequality in Health and Health Care: Global Challenges, Feminist Responses’. We are looking forward to rich discussions on this and other themes in feminist bioethics. Our World Congress has a strong tradition of embracing contributions from a wide range of disciplines, including philosophy, social sciences, critical cultural studies (e.g. gender and sexuality studies, disability studies, race studies, etc.), law, public health, and others. We also welcome early career researchers alongside established scholars and activists.

There are still a few days to go to the abstract closing date (15 April 2018). You can find the call for papers and the simple Abstract and Cover Sheet forms for submission here: http://ijme.in/nbc-20140321/index.php/14th-wcb-india/index/pages/view/call-for-papers

FAB is affiliated with the International Association of Bioethics. The final event of FAB 2018 will be a plenary session run jointly with the 14th World Congress of Bioethics. You can find more information about both meetings at: http://ijme.in/nbc-20140321/index.php/14th-wcb-india/index/pages/view/home-page

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Seek each other out: Nothing About Us Without Us, Autism Awareness Month, and the centering of autistic persons
Alison Reiheld

April is Autism Awareness Month in the U.S.  All too often, the rhetoric around autism is shaped by the needs and voices of the caregivers and families of people who are autistic. Goodness knows the perspectives of caregivers and families are indeed important. As many feminist bioethicists have noted, including the incomparable Eva Kittay in her book Love’s Labor and her essay “Love’s Labor Revisited“, they are too often overlooked for both caregivers in general. As I myself have argued, we unjustly continue to overlook societal obligations to those who engage in unpaid medical caregiving for persons with illness or disability.

But attending to the needs of caregivers and families must not mean centering their needs over and against the needs of the persons for whom they provide care. All too often, those who are physically or neurologically different from the majority have little or no say in the policies and decisions and rhetoric that governs their lives. It’s not for no reason that the abiding slogan of the disability rights movement, adopted by many minority groups, is “Nothing about us without us.” Indeed, this is the slogan used specifically by the Autistic Self-Advocacy Network.

This image shows heads and arms of different skintones interlocked in a circular formation, interspersed with the words "Nothing about us without us is for us." Below the graphic in tiny font are the words "Based on slogan popularized by South African disability rights and youth activists"

If this issue is of interest to you, consider this essay by an autistic person of what it means to handle Autism Awareness month the way it is usually handled. K. Tilden Frost, over at GeekMom, writes:

In a month that is theoretically about raising awareness of issues that affect me, my kids, and my community, I am invisible. There are very real issues affecting the autistic community: abusive therapies and “cures,” culture-wide sympathy with caregiver murders, and the total lack of acknowledgment that autistic kids eventually become autistic adults and have specific and individual support needs, to give some of the many, many examples.

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Weight-loss surgery for teens: a disturbing trend
Catherine Womack

We bloggers and readers been writing and talking amongst ourselves lately about children, weight, fat shaming, and concerns about policing and medicalizing kids’ bodies. Once you start down this path, it’s really hard to stop. And where does this lead? To increased health and fitness, an end to worries about body appearance and function and social acceptability? Not if you read the studies.

The recent news (and blog posts like this, this, and this) about Weight Watchers targeting children with their new teen diet programs has been a hot topic around here. I wrote here about what I don’t like about diets for children even when they’re informed by extensive research. In short, I don’t like weight loss programs that set up kids with possibly unattainable goals that also may not be necessary for them to live healthy and long lives.

But in the realm of kid weight problem concerns, nothing worries me like the increasing push to use both weight-loss drugs and bariatric surgery on children.

Let me repeat this last part: bariatric surgery on children.

What?

No, really, this is a thing now. Here’s Columbia University’s Center for Metabolic and Weight Loss Surgery’s take on age minimums:

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In case you missed it, ACOG’s guidelines on reproductive sterilization were updated last year
Editor

Feminist bioethics is, of course, about more than reproductive ethics. But it is also about reproductive bioethics.  One of the big issues with reproductive bioethics from a feminist perspective is the tension between who is dissuaded from or prevented from accessing sterilization or other forms of contraception, and who is encouraged to use or coerced into accepting sterilization or other forms of contraception.  IJFAB Blog contributor Alison Reiheld has addressed this in the past with respect to some European countries’ policies of mandatory sterilization for transgender people seeking a legal change of gender, and contributor Anna Gotlib has considered coercive sterilization practices in modern US prisons more than once.

In case you missed it, the revisions in April of 2017 to the American College of Obstetrics and Gynecology’s (ACOG) guidance on sterilization procedures for women addressed this tension between preventing some people from getting sterilized and targeting others for sterilization.

Lisa Harris, whose work on conscientious provision as well as conscientious objection is worth a look, had a major influence on these guidelines and her nuanced influence shows in the careful work of the ACOG Committee on Ethics as a whole.  Here is the abstract; click through on the link above for more details.

ABSTRACT: Sterilization is the most common method of contraception among married couples, with nearly twice as many couples choosing female partner sterilization over male sterilization. Although sterilization is among the most straightforward surgical procedures an obstetrician–gynecologist performs, it is enormously complex when considered from a historical, sociological, or ethical perspective. Sterilization practices have embodied a problematic tension, in which some women who desired fertility were sterilized without their knowledge or consent, and other women who wanted sterilization to limit their family size lacked access to it. An ethical approach to the provision of sterilization must, therefore, promote access for women who wish to use sterilization as a method of contraception, but at the same time safeguard against coercive or otherwise unjust uses. This Committee Opinion reviews ethical issues related to the sterilization of women and outlines an approach to providing permanent sterilization within a reproductive justice framework that recognizes that all women have a right to pursue and to prevent pregnancy.

For more on this topic elsewhere on the internet, check out the superb documentary No Mas Bebes on the sterilization of latinas without proper informed consent, this 2017 article on the difficulty of accessing sterilization in Canada for young women who do not ever want to become pregnant, and this 2012 article on the same issue in the US. One need only Google “forced sterilization international” to see a raft of articles on the how the issue manifests in Brazil, with the Roma in Europe, and with disabled and HIV+ women around the world.

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Intimacy Without Reciprocity: How Researchers Working With Transgender Humans Can Do Better
Sayer Johnson

Editor’s Note: This blog comes to us from Sayer Johnson, who blogged for IJFAB Blog in the past on the issue of how clinicians respond to trans patients. Here, Mr. Johnson reaches a frustrated breaking point with the way that researchers wanting to work with trans persons behave in the process of recruiting their research participants. The alert reader will note echoes of important research ethics work on community participant research, especially that done with indigenous communities and with other ethnic minorities and with the disability community (“nothing about us without us” is a good slogan for any researcher to keep in mind). This is just as relevant for working with transgender persons. Yet as Mr. Johnson illustrates, the message isn’t getting through, and the lessons research ethics has already learned are not being implemented well and pervasively.

Mr. Sayer Johnson, social worker, Papi and husband, lifelong activist, and co-founder and Executive Director of the Metro Trans Umbrella Group. He worked with MTUG and the University of Missouri St. Louis to create and sustain an annual conference on the needs of the transgender community and has just released a documentary called TransGeek. He is the founder of the Queer Trans Flat, which provides housing in St. Louis for queer trans humans who have had difficulty finding stable housing. He is working to create power for trans persons in the St. Louis area.

Get ready. This is an early morning rant on being inundated with asks for lab rats AKA research participants. Researchers often start by contacting local advocacy organizations like us (the Metro Trans Umbrella Group, or MTUG, which serves trans humans in the St. Louis Metro Area). Fine. But the way it’s done is a big ethical problem.

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New issue is out! And don’t miss the University of Toronto Press Blog based on an article from the new issue of IJFAB
Editor

The new issue of IJFAB is out with some spectacular articles on topics ranging from childbirth to epistemic injustice to patient noncompliance to Saudi Arabian bioethics. Scroll down to the bottom for the table of contents!

The UT Press Blog also has a short blog, “When Concepts Function Badly: Distorted Thinking and our Understanding of Combat Trauma” by Mary Catherine McDonald, to whet your appetite for the new issue which I have copied here in full and in italics.

In her wonderful essay, “Philosophical Plumbing” – in which Mary Midgley compares philosophy with, well, plumbing – Midgley writes, “when the concepts that we are living by function badly, they do not usually drop audibly through the ceiling or swamp the kitchen floor. They just quietly distort and obstruct our thinking.” It’s a haunting idea – that conceptual mistakes can be so invisibly insidious and corrosive. When we think about things like oppression, we often focus primarily on the victims of that oppression, as we should. But we also need to pay attention to the fact that oppressive structures do not only impact individuals – they infect our ideas, and by extension everything that is touched by those ideas.

Something that I struggle with when teaching the philosophy of gender is getting my students to understand the ways in which structures designed to oppress women or other minority groups eventually impact all of us. Though women are certainly oppressed by the stereotyping, fragmentation, and objectification of patriarchal society, the damage does not end here. The oppressive structures of power also influence the concepts within that patriarchal society, giving birth to all sorts of other flawed ideas. Because we are still so focused on who is oppressed and who is to blame for that oppression, we miss the way in which gendered norms infect all areas of our lives.

How are the concepts that we are living by functioning badly? And how might we fix them? To continue the plumbing analogy, we first must find the source of the leak. It is in this spirit that I began thinking about the history of combat trauma, and the ways in which our ideas of trauma in general have their roots in pernicious concepts about gender and weakness. If our current classification of PTSD begins with hysteria – a diagnosis deeply rooted in misogyny – how might this impact the way that we understand the phenomenon?

In the paper, I explore the ways in which we have used the oppressive structures at work within our understanding of PTSD to systematically undermine those who suffer from it. To silence them, negate their experience, and prolong their suffering. It’s not the gender of the soldiers at issue here – it is the way that gender informs our understanding of combat trauma. How do conceptions of femininity (in a pejorative sense) and weakness get imported from history into clinical and societal understandings of trauma today? Finally, what might happen when we free our understanding of combat trauma from these insidious concepts? We come to see it as it really is: an adaptive response to an overwhelming experience that is rooted in an impulse to survive, a response borne of strength, not weakness.

Mary Catherine McDonald’s full IJFAB article, “Hysterical Girls: Combat Trauma as a Feminist Issue”, is available open access by clicking on the linked title in this sentence.

You can find the full table of contents for the new issue online here. It has clickable links to the articles. But if you love a good look-see as much as I do, here are the other articles in the issue:

ESSAYS

  • Childbirth is Not an Emergency: Informed Consent in Labor and Delivery by Allison B. Wolf and Sonya Charles
  • Appropriations of Informed Consent: Abortion, Medical Decision Making, and Antiabortion Rhetoric by Heather Lakey
  • Self-Governed Agency: A Feminist Approach to Patient Noncompliance by Ruth Tallman
  • Should Pregnancy Be Considered a (Temporary) Disability? by Devora Shapiro
  • From ‘She Would Say That, Wouldn’t She?” to “Does She Take Sugar?” Epistemic Injustice and Disability by Jackie Leach Scully
  • Beyond Sacredness: Why Saudi Arabian Bioethics Must Be Feminist by Ruaim A. Muaygil

 

Click on through to the table of contents in the above link for these essays, reviews of books on sexuality and reproduction and disability, and more.

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Larry Nassar, Sexual Assault by a Physician, and an Army of Women: IJFAB editors’ take from within the MSU community
Robyn Bluhm

Written by Robyn Bluhm of MSU with input from, and speaking for, the other MSU-affiliated IJFAB folks: two Editors of the International Journal of Feminist Bioethics (Jamie Nelson and Hilde Lindemann) and the Editor of the IJFAB Blog (Alison Reiheld).


IJFAB is currently hosted at Michigan State University (MSU). Three of the Journal’s editors and the editor of the blog have close connections with the university (one Professor Emerita, two current faculty members, and one Ph.D. alumna). We therefore feel that we should comment on recently disclosed events at the university. Many readers will already be aware that hundreds of children and young women were sexually abused by Larry Nassar, a doctor affiliated with MSU as a faculty member who practiced at MSU’s sports medicine clinic. Nassar used his authority as a physician to molest his patients while telling them that his actions were a medical treatment.

Larry Nassar alone is responsible for his actions. However, the responsibility for the creation of the institutional systems, professional regulations, and social structures that enabled his crimes is widespread. MSU is currently under investigation to determine the extent to which Nassar’s crimes were known by his colleagues and by university administration. There is some evidence that complaints were made about his behavior dating back over 20 years.

A person whose face is not visible holds a sign, which occupies most of the image. Written on it in big black marker is “Nassar Enablers. WE’RE COMING FOR YOU.” A chiron at the bottom says “Hundreds of MSU Students Rally to Support Nassar Abuse Survivors” and bears the logo of a local Detroit, MI TV news station.
IMAGE CREDIT: wxyz.com

Bioethics, frankly, has little to tell us about Nassar’s actions; we don’t need ethical analysis to tell us that what he did was horrible beyond words.  But bioethics, and feminist bioethics in particular, may help us to understand how he was enabled to do so. For example, it has been suggested that

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Objection! Sustained
M Sara Rosenthal

Editor’s Note: This blog entry by special guest author Dr. M. Sara Rosenthal is part of our miniseries on conscientious objection including the Editor’s introduction and blog entries by Ruth GroenhoutKarey Harwood, and Laura Guidry-Grimes on this subject.

This month, the Trump Administration introduced a mechanism through HHS for healthcare providers to object to performing procedures they find morally distressing or objectionable based on their religion to “ease the way for doctors, nurses or other medical professionals to opt out of providing services that violate their moral or religious beliefs.” For more information see:

HHS will soon create the Conscience and Religious Freedom Division — an entire division devoted to conscientious objection.  The vast majority of bioethicists find this announcement to be cause for concern because it introduces further barriers to healthcare for many groups already disenfranchised or vulnerable. But it also violates what bioethicists see as clear duties of care inherent in the medical profession. (See: https://www.reuters.com/article/us-usa-healthcare-religion/u-s-government-to-shield-health-workers-under-religious-freedom-idUSKBN1F7262)

I have mixed feelings about this new division, which may become a cautionary tale for the Trump Administration. Moral diversity and “moral objection” swings many directions, and by creating an official conscientious objection division, the Trump Administration must now allow for a wide range of moral protections for practitioners.  In some ways, this could provide unanticipated protections for the very groups the Administration seeks to deride.

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Conscientious Objections, Professional Limitations, and Hard Realities for Hospitals
Laura Guidry-Grimes

Editor’s Note: This blog entry is part of our miniseries on conscientious objection including the Editor’s introduction and blog entries by Ruth Groenhout and Karey Harwood on this subject.

The newly formed Conscience and Religious Freedom Division of the Office for Civil Rights in HHS raises a host of questions that should be considered from multiple angles. I want to address this issue as a clinical ethics consultant who has been involved in conscientious objection (CO) policy discussions at multiple hospitals in different locations in the U.S. I have also served on Healthcare Equality Index initiatives and trained hundreds of staff on ethical care for LGBTQ+ patients. Because my experiences are in acute care hospitals, I will not comment directly on the ethically urgent issues that arise in other contexts, such as EMS and fertility clinics.

It is worth noting some important ambiguities and unknowns related to this Division’s role and powers. Based on the Division’s website and their recent press release, the Division will evidently force hospitals to give protections to healthcare professionals (HCPs) who claim CO, which could mean that HCPs cannot be fired for refusing to provide care to certain patients on the basis of conscience or religious conviction. It is unclear how much flexibility hospitals will have in training staff and promising protections for patients. For example, the Division welcomes complaints from HCPs who “feel pressured by employers to ‘perform, accommodate or assist with’ procedures that violate their beliefs.” Depending on what is meant by “pressuring,” hospitals could be tightly restricted in how they train staff on LGBTQ+ patient care, legal abortion care, or potentially other areas of cultural competence. Additionally, hospitals might not be permitted to ask staff to make reasonable referrals inside or outside the institution when they invoke CO, or even train staff on how to make such referrals, since doing so would presumably pressure them to accommodate patient requests.

A hospital should be a safe space for anyone to receive care, period. A hospital should actively take steps to ensure that they are not rendering patients vulnerable or compounding their vulnerability. Continue reading

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On the common good and medical conscience claims
Karey Harwood

Editor’s Note: This blog by Associate Professor of Religion Karey Harwood is the second in our miniseries reflecting on the Trump administrations’s support for expanded conscientious objection in medicine. For background readings, see the Editor’s introduction to the series. For another view, see philosopher Ruth Groenhout’s contribution to the miniseries.

The Trump administration’s new Division of Conscience and Religious Freedom in the Department of Health and Human Services aims to protect the rights of health care workers who refuse to do part or all of their jobs based on an alleged conscientious objection.  Such an objection could include anything from a pharmacist who refuses to fill a legal prescription for birth control based on his religious beliefs about artificial contraception to an ambulance driver who refuses to drive a transgender person to the hospital based on… Is anyone prepared to argue seriously that an ambulance driver’s distaste for transgender persons rises to the level of a “conscientious objection”?   Such individual acts of contrarian self-expression, whether they are based on church teachings or mere prejudice, are a breach of the social contract and do not deserve protection.

The Hastings Center puts the matter simply: “Conscientious objection in health care cannot be framed solely as an issue of individual rights or beliefs because it always affects someone else’s health or access to care.”

But in addition to disregarding the real harm conscientious objectors may do to others, framing conscientious objection in terms of individual rights and beliefs obscures the bigger picture: what is owed to the common good.

We see a valley and a river  through a small village at the base of a large dam, holding back the river. It has cracks in it. On the damn is written "THE COMMON GOOD."

Art by Frits Ahlefeldt

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