Marie Claire magazine does feminist bioethics
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In a turn that should not be all that surprising given that Teen Vogue has published on evidence-based sexual health and Cosmopolitan has published serious work on sexual harassment and assault, the young person’s fashion and beauty magazine Marie Claire has produced a really solid article by Kayla Webley Adler on the way that women are not well-served by the concepts, structures, and practices of our health care system. Here’s to the young readers who are hungry enough for such thoughts that the mass media are willing to provide them.

Another reason not to be surprised: their Twitter tagline is “If it matters to women, it’s in Marie Claire.”

This image shows a Twitter screen cap with the tagline "If it matters to women, it's in Marie Claire" circled.
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Access to health  care does matter to women. So, I guess so. Kudos, Marie Claire, and to Kayla Webley Adler on a well-written accessible article that raises some of the major feminist bioethics critiques of modern medicine.

Women Are Dying Because Doctors Treat Us Like Men: For years, physicians have referred to women’s healthcare as “bikini medicine” and assumed they can diagnose and treat both genders the same way. But it’s costing women their lives.

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Questions and Sorrow and Regret and a Plan: Reflections on Medical Scarcity and Triage in the Gaza Strip
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We all see things through our lenses, for good or for ill. And when listening to the numbers of civilian casualties in Gaza in U.S. press coverage over the last few days, I kept thinking about the emergency rooms and medic services that must be overwhelmed. They must be losing people waiting for care, I thought, or due to lack of supplies. That was my bioethics lens. But I forgot about my other lens, the one I always wear, the one of being steeped in American parochialism.

In fact, as I learned researching this piece and to my shame was not fully aware, the WHO has long noted there have been chronic medical shortages in Gaza due to blockades enforced by Israel which prevent everything from concrete to electronics to medical supplies from entering Gaza in accord with economic need, via land or sea. The World Bank estimated in 2015 that GDP losses in Gaza caused by the blockade since 2007 alone have been above 50%, and entailed large welfare losses.

While the current U.S. news coverage of the violence in Gaza has been framed as a response to the U.S. embassy opening in Jerusalem on 14 May 2018, in fact it is related to the Palestinian protest known as the Great March of Return, which began on March 30. Jacobin’s Greg Shupak has a useful breakdown of what the protest has been about; whether or not one agrees with anger, it is best to understand why people are angry. Live fire casualties have not only occurred in recent days, but also have punctuated the duration of the protest as per this Haaretz article from April 29 and this 972 article from the first day of the protest on March 30.

An 11 May article from Doctors Without Borders / Medecins Sans Frontieres reports on their work over the past month.  MSF says that it has been treating major trauma injuries–“fist-sized” exit wounds; bone “pulverized into dust”–in half of all patients in their clinics, with the number of people treated in MSF clinics in the past month in Gaza being more than were treated in all of 2014 during Israel’s last major military operation in the Gaza Strip, Operation Protective EDGE.

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Why Trans Exclusionary Feminism is Bad For Everyone
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Editor’s Note: From time to time, IJFAB Blog features  content that isn’t directly about bioethics but is most assuredly about feminism and gender. This helps us to get our own frameworks clear, whether because we agree with the author or are forced by the author to better understand and justify our own positions. Or both. This original piece by Anna Swartz, who works on issues in feminist bioethics including constructions of mental illness, is one such work. Swartz is also an artist and this blog features her artistic as well as scholarly work.

At a time when transgender rights are ascendant (albeit precarious in every way), a subgroup of self-described “radical feminists” insist on regarding trans women as men while actively fighting to exclude them from women’s facilities (such as public restrooms) or events organized exclusively by women. These trans exclusionary feminists, commonly known as TERFs, characterize a bizarre and insidious brand of cis-centric White feminism that subscribes to a prescriptive understanding of womanhood through the narrow and exclusionary lens of biological sex.

I write here because I really hope that as time goes on, cisgender people learn that our liberation is inextricably tied to that of people who are trans or non-binary. Any praxis that doesn’t center that basic fact needs to be revisited. So let’s revisit.

This image shows an early, typed draft of this blog entry that the author printed out, cut into strips, and was experimenting with in terms of re-arrangement. The pieces are laid at different angles, and we see both a pen and a pair of scissors.

This blog, under revision

TERFs—and their ideological cis-centric feminist allies—insist upon inclusion in a set of gender politics that antagonize trans and non-binary women because they do not fit comfortably within a rigid gender binary that equates “real womanhood” with vaginas, uteruses, and reproductive capacity. This belief that trans women are “not really women” sadly finds traction among many people—including contemporary White liberal feminists and so-called radical feminists.

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“More an Inmate Than a Patient…”: check out this consideration of autonomy and long-term care settings
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Bioethicists have long been alert to the delicate dance of preserving patient autonomy in long-term residential care settings such as nursing homes, rehabilitation facilities, and other institutional settings where patients may reside for extended periods of time in the U.S. Indeed, this is a key issue for disability activists who argue that keeping persons with disabilities in their homes–with social support for modifying those homes–rather than in institutions for as long as possible is the best way to maintain personal autonomy.

Just a few days ago, WBUR produced a long-form consideration of this issue, “More an inmate than a patient…” by Tufts University anthropologist Rosalind Shaw. In the time-honored tradition of Oliver Sacks and other academics or physicians who turn their professional lens on their own medical experiences, Shaw examines her experience in several Boston-area rehab facilities recovering from a pelvic fracture.

In the pull-quote that gives rise to the title, Shaw says,

I felt more like an inmate than a patient in environments that were more authoritarian, less medically competent and more depersonalizing than anything I’d experienced before.

After years of acting as a concerned patient who took responsibility for her side of the patient-provider relationship by asking questions and engaging in shared-decision-making, Shaw describes checking in to the rehab facility:
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It was a shock, after Dana-Farber, to arrive at West of Boston. I annoyed the unsmiling male nurse assigned to me by asking him to clarify the consent forms, and then by requesting a female nurse. I was wearing a catheter, I explained. He immediately lifted my gown and grabbed my catheter.

I spent the next four days trying to get out of West of Boston. On the third day, I spent a painful night after being told that my pain medication had run out. On the fifth day, as I left, my nurse didn’t want to hand over my remaining medications. I discovered that several pain pills were missing.

I was transferred to a better facility, which I’ll call North of the River. Nobody there violated my bodily privacy or left me in pain after stealing my pain meds. But in both facilities there were other, less flagrant and often unintended institutional ways of stripping people of their personhood.

One would be right to wonder how much our society’s attitudes towards disability, aging, and gender play a role. The subject headings Shaw uses tell us a great deal: “An Awkward–and Unwashed–Object” in which Shaw describes staff not even addressing her by name and other accumulated indignities, “Perhaps if I do what the nurse wants, she’ll be kinder…” in which Shaw discusses the way that anything other than immediate compliance results in hostility, and “If there’s a next time…” in which Shaw considers what can be done differently. Given the way we age, there likely will be a next time. Please click through to read the piece in full if this is an issue of interest for you.

 

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Transgender residents of Wisconsin sue the State for Medicaid coverage of gender confirmation treatments
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As you may know, Medicaid is the US government health care safety net program for low-income Americans. While both the federal government and each state government contribute funds, the states make the decisions on allocation of those funds. Some states may cover procedures that other states don’t. And since transgender Americans are more likely to be low-income than their cisgender counterparts–nearly four times as likely to have household income under $10,000/year compared to the general population; 27% of trans persons surveyed make less than $20,000/year–many rely on Medicaid for their healthcare.   This is especially true for trans persons of color.

Over in Wisconsin, two Wisconsin residents who are transgender are suing the state for the right to have Medicaid cover their gender confirmation treatments (AKA transition). One of the transgender patients also has cerebral palsy, while the other has had to take out loans to cover some procedures but cannot get a large enough loan to cover the remaining procedure. Both already have hormone treatments covered by Medicaid.

There are two pictures in a mosaic. On the left is a man with short hair and glasses, smiling a small smile in the sunlight, wearing a blue t-shirt and grey hoodie and sitting in a power chair with a headrest visible behind him. On the right is a woman with long reddish blonde hair, glasses, and a black hooded shirt with pink drawstrings. She looks seriously away from the camea.

Cody Flack, left, and Sara Ann Mackenzie, right, are suing the state of Wisconsin for Medicaid coverage of gender confirmation treatment.

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Wisconsin is amongst the ten (along with Alaska, Wyoming, Nebraska, Iowa, Missouri, Tennessee, Georgia, Ohio, and Maine) of the US’s fifty states whose Medicaid programs do not cover such procedures. Eighteen states cover the procedures explicitly, and another 22 have no clear policy. While the Obama administration had interpreted Section 1557 of the Affordable Care Act prohibiting discrimination on the basis of sex and gender to include transgender persons, the Trump administration has explicitly rejected this interpretation and is rolling back these protections as seen in Health and Human Services’ current explanation of 1557.

You can read more about the Wisconsin case at the Milwaukee Journal-Sentinel, The Blaze, and Into.

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Should Institutional Review Boards charge a fee to review research proposals? WUSTL gives us a test case
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In the US, researchers at academic institutions who do work with human research participants must obtain the approval of an Institutional Review Board (IRB) that looks to assure that research protocols do not violate ethical requirements for such research. Washington University of St. Louis’s Institutional Review Board will now charge fees to review proposals for research. According to one Wash U researcher, they were notified of the policy in a letter dated May 1, 2018.

This image shows a maze with white-coated persons wandering through it. At the entrance, the wall says "Path to IRB Approval. Start Here" Arrows can be seen on walls inside the maze, labeled "Ethics", "Compliance", and "Liability."

IMAGE SOURCE: Nature (the journal)

IRB members–from within the institution and the community–typically are not paid for their work and perform their duties as a service. Without IRB approval, researchers are essentially unable to work with participants. For one thing, funding agencies usually require IRB approval. For another, peer-reviewed scholarly journals typically will not publish research with human participants that has not been done under the oversight of an IRB. And aside from practical issues, IRBs serve a very important ethical function in checking the assumptions and authority of researchers, ideally to protect research participants from exploitation*. WUSTL’s fees range as high as $2,500 for private non-profit groups and for-profit groups. For other entities, fees may be as low as $0 for departments within the university but as high as some unknown number depending on criteria which are not entirely clear at this time; the fee schedule says only to contact the IRB for the departmental fee schedule at the time of grant/research proposal.

Other academic IRBs also charge for their services to various users, some just for industry-sponsored research but others for a wide range of users. Here are some links to IRB fee policies at Northwestern University, University of California-Irvine, University of Illinois – Chicago, and Georgetown University.

Should IRBs charge for their services? What does the money cover? Free labor under the guise of service requirements is a real problem in universities, especially for very demanding service like IRBs. Will IRB members now be paid? And if so, does this introduce a conflict of interest of any kind?

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In a tweet this morning, bioscience researcher Dr. Danielle Lee asks, how will this affect pilot, tentative, or exploratory research? And she raises concerns about how this will effect new or emerging scholars as well as cash-poor students, labs, and principal investigators. Lee contends that “charging for IRB dramatically contracts WHO does human-population research, types of studies, etc.”

In a Twitter thread this morning on WUSTL’s new system, a  PhD candidate at WUSTL asks some other serious questions and suggests a better fee scheme. Click through to check out the whole thought-provoking thread.

IRBs watch over the ethics of researchers. Who watches the watcher? Let’s have a discussion. Is this a good idea? If implemented well, could it be? What would that look like? Or is there no way to implement this well enough?

*For more on the history of IRBs, check out Brandeis University’s handy short guide.

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Persons as Producers: Why bioethics should be concerned with work culture and the structure of labor
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Today, May 1, is known in the labor rights movement as May Day or International Workers’ Day. It celebrates the dignity of laboring humans and the right to be seen as and live as fully human. I want to use this day to revisit the implications of the US culture and structure of work for health and caregiving. In particular, I raise concerns about how the valuation of persons as producers is inextricable from problems of access to health care.

May 1 provides an important opportunity for such reflection. In the United States, the concept of the 40 hour work week, and the 8-hour-workday-with-an-hour-for-lunch, exists because of the movements celebrated today.  Without these movements, the notion of a “9 to 5” job 5 days a week would not exist (and we’d be short one fantastic satirical Dolly Parton song and related film).  In France, the 35-hour working week—above which overtime must be paid–was adopted in 2000 and is also a legacy of labor rights activism. Many other nations celebrate worker safety protections, compensation laws, and more on this day. And many nations see protests, marches, and rallies on this day to continually advance the rights of laboring humans.

But the power of International Workers’ Day is defused in the United States. As Chris Morris at Fortune noted today, “for most people in the U.S., it’s just another Tuesday.” This is particularly odd as the origins of this day tie back to the United States and the 1886 campaign for an 8-hour work day.

A woodcut is shown with 3 panels. The first shows a person in a floor-length garment working st a standing bench and says "8 hour for work." The second shows a person's feet sticking out from under a blanket as they lie in a bed with a night sky outside the window, and reads "8 hours for rest." The third shows two people in a boat on a river or lake, one reading a newspaper while the other rows, and reads "8 hours for what we will."

But the 40 hour work week and 8-hour-workday-with-an-hour-for-lunch no longer reflect the worklife of most workers in the US today for whom long hours at salaried jobs and precarious hourly jobs are the norm, without reliable access to sick leave or health insurance. And as always in the US, race, gender, and educational access affect our work chances enormously.

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Individualization, Access, and Bias: ACOG issues new consensus call for improvements to maternal health care, but there are serious pitfalls to watch out for
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I am struck by what health care disparities and the lived experiences of postpartum patients mean for implementation of the American College of Obstetrics and Gynecology’s new guidelines on postpartum care. These guidelines valuably refocus the medical establishment’s focus on the health needs of persons who have been pregnant, not just on the health needs of babies. The merits of this document are many, including but not limited to (A) systematic guidelines to regularize contact with postpartum patients after labor & delivery, (B) attention to connecting postpartum patients with health care providers who can provide continuity of care for other health conditions, and (C) attention to postpartum patients who have experienced miscarriage, stillbirth, or neonatal death.

However, I have three serious concerns with how this document will be implemented as well as with the document itself. First, I am concerned about the individualization of responsibility.  Second, I am concerned about whether the guidelines will benefit all birthing persons, especially black women. And third, the fact that lack of benefit to all birthing persons could involve bias in the way that providers respond to postpartum black women.  These concerns are not adequately addressed by the ACOG guidelines and I fervently hope that obstetricians, nurse midwives, midwives, and obstetrical nurses reading this will take these concerns seriously and share them with colleagues.

Before we get to these points, let’s clear about the facts on the ground in the U.S. Pregnancy health care in the U.S. is quite poor. In fact, we rank last in the developed world for maternal mortality and things are only getting worse.

This image shows the maternal mortality curves for most other developed nations dropping , or at least staying low, since 1990. US rates stay steady and then begin to increase markedly beginning in 2000 at which point all other developed nations have mortality rates begin to steadily decrease to the present day. We now exceed the next closest maternal mortality rate by over 2.5 times.

IMAGE CREDIT: Rob Weychert/ProPublica. DATA SOURCE: The Lancet

 

According to journalist Nina Martin, for the 700 women who die each year in the US of complications from pregnancy and childbirth, an estimated 50,000 more suffer life-threatening and often debilitating complications. In a 2017 investigative report, Pro Publica and National Public Radio (NPR) found that 60% of these maternal deaths in the US are potentially avoidable. The problem, in their view? Pregnancy care focuses on fetuses and, post-partum, on babies rather than on pregnant and post-partum women. You can see, perhaps, why the ACOG opinion statement is so welcome.

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

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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
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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.


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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
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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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