IJFAB Blog | Official Blog of IJFAB: the International Journal of Feminist Approaches to Bioethics

Major change coming to new WHO disease classification system for transgender persons, but will it be good?

Posted on June 18, 2018 by Alison ReiheldJune 19, 2018

I have long been concerned with how our nosologies–the way in which we classify diseases, and decide which human conditions count as diseases–exemplify a mix of science and social values. In my work, I’ve touched on this with obesity, and with a range of conditions from ADHD to autism and depression. For decades, being transgender has been diagnosable under the international classification of disease (ICD) and the diagnostic and statistical manual of psychiatry (DSM). Now, a major change is coming to the classification of transgender and I have a sense of restrained optimism about it.

The image shows computer generated cartoons of health care professionals with various graphics indicating medicine such as graphs, charts, stethoscopes, white coats, and scrubs. The text reads "ICD-11: Classifying disease to map the way we live and die"

Screenshot of the World Health Organization’s webpage on ICD-11 which went live today

While the phrasing and exact nomenclature has shifted over various editions of the ICD and DSM, trans has long been classified as a mental health issue. These codes are often used by hospitals, clinics, and health insurers (whether private or nationalized) to determine eligibility for coverage of related procedures. Even small clinics hire people specially trained as medical coders who can assign appropriate ICD codes to maximize the possibility of reimbursement and coverage for services which doctors and patients agree are needed.

This is the upside of the medicalization of trans: with a code, trans patients have a shot at getting their transition treatments covered by insurance. Without medicalization, whereby a human condition comes to be seen as a medical one, humans with unmedicalized human conditions stand a poor chance of getting any assistance from health care for their needs. But how a condition is medicalized is as important as whether it is medicalized. For medicalization can entrench stigma and reinforce power structures as much as it can disrupt them. Trans status has long been classified as a mental illness. This reinforces existing social attitudes of disgust, giving a scientific stamp to seeing trans as a pathology. Many folks have argued that it reinforced stigma against trans persons. This may be about to change.

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Sports are something we made, and we can remake them: trans athletes, fairness, and barriers in sports

Posted on June 2, 2018 by Emma TumiltyJune 2, 2018

Let me start by echoing Talia Mae Bettcher that transgender women are women and transgender men are men (Bettcher, 2013). The definition of “woman” includes all those individuals who identify as a woman and the definition “man” includes all those individuals who identify as a man.

In addition, ciswomen who have “abnormally” high testosterone levels are women and therefore the testosterone range for women is the one that includes these values. I use only distinct terms in this post to discuss the arguments being made by others. When we start from this perspective then some of the discussions around athletes that have occurred this year (and in the past) have been not only hurtful, but also somewhat nonsensical.

A recent blogpost on BMJ Sports Blogs, discusses whether fairness or inclusivity should be the guiding principle in determining whether transgender athletes should be allowed to compete in the category of gender with which they identify (“Time to dispense with the male/female binary in sport?,” 2018). The writers’ conclusion is that inclusion is important but the demands of fairness cannot be met if transgender women are included with ciswomen in the female category and so it would be better to have new categories. These proposed categories should be based on “a) social parameters including gender identity, and b) physiological parameters including testosterone” in competitive sports. They argue that transgender women have an advantage over and above what an “acceptable” advantage is in competitive sport and that therefore it is unfair. They delineate acceptable advantages based on natural variation using height as an okay genetic advantage, but historic hormone levels as “unacceptable advantage” because height variations between “biological” females and males overlap, but hormone levels do not – as they say “testosterone is not a physiological parameter available to cis-women”(“Time to dispense with the male/female binary in sport?,” 2018).

Another article in the New York Times (Longman, 2018), discusses rules being brought into effect by the International Association of Athletics Federations, known as the I.A.A.F. in November this year. These rules for female track athletes initially mean, women with testosterone levels higher than a selected range could not compete with other women although they could compete in the male races. This despite the fact that the elevated testosterone levels found in women such as Caster Semenya (who I believe identifies as a woman), do not overlap with male testosterone levels and of course male competitors would, one assume, have many advantages not open to Caster Semenya based on those testosterone levels.

If we examine these issues in turn, before speaking to the broader issue at play here, then the first argument put forth by Anderson et al (“Time to dispense with the male/female binary in sport?,” 2018) is that advantages are unfair, when they couldn’t possibly have happened to me. Height variation as a performance enhancer between athletes is seen as okay because tallness is a variation that technically could happen to anyone. Testosterone levels between females and males apparently never overlap, therefore for a transgender woman to compete with ciswomen, she has an advantage that others had no possibility of accessing. This seems quite an odd distinction to make for unfair advantages in sport. The decision by the I.A.A.F. does not seem to meet this criterion as Caster’s testosterone levels are higher than average for females, but lower than those of males. The I.A.A.F seems to make the decision based on study that showed that increased levels of testosterone in females, could provide a 2-4% increase (approximately) in performance (Bermon & Garnier, 2017) (this paper is being contested, see: (“Call for the authors of Bermon and Garnier to share the underlying performance data – BJSM blog – social media’s leading SEM voice,” 2018). Such a performance bump is unfair, in this view.

“Fair” is a complicated, and I would argue almost an arbitrary, concept in sports as it currently stands, insofar as it is constructed – some doping/enhancement distinctions are one example of this arbitrariness (Savulescu & Foddy, n.d.). For Caster Semenya and others like her, why is her physiological variation (and advantage) policed in a way that male athletes are not. There are some genetic anomalies that male athletes have that put them ahead of their peers that are by degree often larger, too (i.e. greater than 2-4%). For example, Michael Phelps has genetic and physiologic variations, outside of the normal range of his peers, and obviously they produce significant advantage to him based on his performances which are remarkable (peak performances in short succession based on physical recovery potential, being one). What is the meaningful difference between his variations and Semenya’s other than that Semenya’s is hormonal and so specifically something we can attach to gender?

Considering, the idea of fairness being defined as an advantage that I could have access to (as a probability) but do not actually have raises serious questions when applied to things outside of genetics and physiology. There appears to be a benefit to having access to wealth, either as an individual athlete or within the country for which the athlete competes. Such wealth provides elite coaches, sports nutritionists, sports psychologists, cutting edge science and equipment, etc. While there are athletes who win despite not having this highest level of development, if we were to be able to do an analysis of medalists and their access to such services (especially for some sports over others), I do not think it would be unreasonable to assume that such support provides a competitive advantage. A competitive advantage of a degree that is as significant as those explained as unacceptable for transgender athletes or those ciswomen who have higher testosterone levels (remember, 2-4%). Could those people who have discipline and natural talent, but come from backgrounds with less resources technically have access to such services, when considered as a probability? I guess so, but what does that really mean in terms of fairness…? If the probability is greater is it fairer, and as the probability diminishes is it less fair?

So a genetic anomaly that means my lactate production is performance enhancing (Phelps) is very rare whereas testosterone level variation in females is less rare (by comparison). Technically then Phelps should be excluded and Caster Semenya, should remain. Is fairness a range (from fair to unfair), rather than a binary? To be reasonable to Anderson et al, in their argument, given the comments regarding overlapping physiological parameters, I believe they envision fairness as a binary rather than the spectrum described above, that is 0% probability is unfair, but have they really considered that 1% would be fair? A 1% chance of having a physiological presentation that conveyed an advantage? What about disadvantages? Do the death threats, trolling, name-calling, booing and the like that transgender athletes face constitute a significant performance disadvantage? I would argue they do.

The problem with all of this is allowing a discussion to continue that really is fundamentally harmful. Sporting bodies and sports perpetuate a gender binary that is hierarchical and inaccurate. In addition, they police female athletes’ bodies in ways they do not police males’ bodies (male bodies are policed regarding doping but not regarding gender). Up until only recently, the I.O.C. was still performing gender verification tests on female athletes (Cavanagh & Sykes, 2006) and their recent rules that affect Caster Semenya amongst others ask them to treat their “condition” in a medical way (which carries risk) when they don’t have a medical issue. While the Anderson et al’s call, echoed by others (“Part 2,” 2018, p. 2), for a testosterone category seem prima facie fairer, the choice of only testosterone seems to be based on a hang up around issues of gender, given the lack of clear understanding of the many variables that produce advantage and their interactions. Transgender athletes specifically (in contrast to women with high testosterone levels) have hormone levels that are within the range defined for females. There is little scientific evidence to suggest that their historic hormone levels convey an advantage.
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A systematic review of guidelines regarding these issues in sport found that very few were evidence-based and that transathletes faced significant barriers to participation (Jones, Arcelus, Bouman, & Haycraft, 2017). That is unacceptable. Sports are something WE MADE for our entertainment and as a means of testing the bounds of our possible human performance. They are not untouchable, separate from our conceptions of society. When those that govern sports maintain anachronistic conceptions of gender, we as society do not win and we as a society have to push back. We made sports, and we can remake them.

1. Bermon, S., & Garnier, P.-Y. (2017). Serum androgen levels and their relation to performance in track and field: mass spectrometry results from 2127 observations in male and female elite athletes. Br J Sports Med, 51(17), 1309–1314. https://doi.org/10.1136/bjsports-2017-097792

2. Bettcher, T. M. (2013). Trans Women and the Meaning of ‘Woman.’

3. Call for the authors of Bermon and Garnier to share the underlying performance data – BJSM blog – social media’s leading SEM voice. (2018, May 10). Retrieved May 21, 2018, from https://blogs.bmj.com/bjsm/2018/05/10/call-for-the-authors-of-bermon-and-garnier-to-share-the-underlying-performance-data/

4. Cavanagh, S. L., & Sykes, H. (2006). Transsexual Bodies at the Olympics: The International Olympic Committee’s Policy on Transsexual Athletes at the 2004 Athens Summer Games. Body & Society, 12(3), 75–102. https://doi.org/10.1177/1357034X06067157

5. Jones, B. A., Arcelus, J., Bouman, W. P., & Haycraft, E. (2017). Sport and Transgender People: A Systematic Review of the Literature Relating to Sport Participation and Competitive Sport Policies. Sports Medicine, 47(4), 701–716. https://doi.org/10.1007/s40279-016-0621-y

6. Longman, J. (2018, April 26). Track’s New Gender Rules Could Exclude Some Female Athletes. The New York Times. Retrieved from https://www.nytimes.com/2018/04/25/sports/caster-semenya.html

7. Part 2: Health, Hormones and Human Performance take centre stage – BJSM blog – social media’s leading SEM voice. (2018, May 16). Retrieved May 21, 2018, from https://blogs.bmj.com/bjsm/2018/05/16/part-2-health-hormones-and-human-performance-takes-centre-stage/

8. Savulescu, P. J. (n.d.). Le Tour and Failure of Zero Tolerance: Time to Relax Doping Controls, 10.

9. Time to dispense with the male/female binary in sport? Analysis of the cases of Laurel Hubbard and Mack Beggs – BJSM blog – social media’s leading SEM voice. (2018, April 11). Retrieved May 21, 2018, from https://blogs.bmj.com/bjsm/2018/04/11/time-to-dispense-with-the-male-female-binary-in-sport-analysis-of-the-cases-of-laurel-hubbard-and-mack-beggs/

“I keep telling you… I can’t get in the building”

Posted on May 28, 2018 by Jackie Leach ScullyMay 28, 2018

In this recent article from The Guardian, Frances Ryan (who reports frequently on disability issues) draws attention to the following Kafka-esque situation. Disabled people in the UK whose eligibility for benefits has to be assessed (ie, to check they are disabled enough to be eligible for support) are required to report to assessment centres. In 40% of cases, the centres are not accessible to people with disabilities.

This picture of a quote from the Guardian article reads "A deaf man in Southend-on-Sea told me he was sent to an assessment building where the only entry was through an intercom"

IMAGE SOURCE: The Guardian

Disabled claimants are then promptly sanctioned for non-attendance (have their benefits withdrawn) or else are assessed as fit enough to work (and have their benefits withdrawn). This isn’t a new situation – it’s not that the buildings have suddenly become inaccessible – but the response of officialdom over the last couple of years is increasingly rigid and punitive.
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In my experience, nondisabled people find it hard to believe when disabled people claim that things like this happen all the time. (Those of us so inclined can take this as a classic example of testimonial epistemic injustice.) They also find it hard to credit that, as one person interviewed in this report suggests, “This is deliberate…. They know we can’t access the building.”

I’m not sure that individual offices are deliberately chosen to be inaccessible, nor that individual claimants are being targeted. But somewhere along the line, at some higher level, a conscious decision has been taken: that disabled people are a group of citizens who nevertheless can effectively be left by the side of the road, because the present UK government feels confident it get away with doing so. Nothing else can adequately explain the complete lack of response to individual complaints, collective protest, or the growing climate of utter contempt and indifference towards disabled people.

Outcome of Irish abortion vote: Repeal of the 8th

Posted on May 26, 2018 by Alison ReiheldMay 26, 2018

I appreciated Sorcha’s excellent blog the other day in the lead-up to the Irish vote on whether to repeal the 8th amendment which was added to the Irish constitution 25 years ago. For more background, check it out. But I just wanted to make a quick post as this issue is also near and dear to me, and I am overjoyed to see that the blunt tool of the 8th amendment to the Irish constitution has been repealed, as reported by the Guardian a few hours ago:

The Irish electorate voted by 1,429,981 votes to 723,632 in favour of abolishing a controversial constitutional amendment that gave equal legal status to the lives of a foetus and the woman carrying it. The result was a two-thirds majority: 66.4% yes to 33.6% no.

All but 1 region/constituency (Donegal) in the Republic of Ireland voted by majority to overturn the 8th. This decision was not the result of just a few very populous regions.
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It remains to be seen what will take the place of the 8th. But Irish lawmakers and citizens have 25 years of poor outcomes and moral peril to consider in crafting Ireland’s new status quo on abortion. Let’s hope it is done with care.

‘No’ means we keep the Status Quo: A ‘yes’ vote is the only morally acceptable result in Ireland’s Abortion Referendum

Posted on May 24, 2018 by Sorcha Uí ChonnachtaighMay 24, 2018

Editor’s Note: Irish philosopher Sorcha Uí Chonnachtaigh is a long-time member of the Feminist Approaches to Bioethics Network, and writes for IJFAB Blog today on the upcoming urgent vote on whether to keep Ireland’s 8th amendment. As has long been noted, such total bans on abortion (which exist in other nations as well) primarily affect women without the means to travel to neighboring nations which allow abortion. Indeed, between 1980 and 2016, at least 170,216 women and girls traveled from Ireland to get abortions elsewhere. IJFAB blog authors have previously written on abortion in Ireland and on abortion laws in Tasmania, Spain, France, and more. What is the nature of the Irish law up for repeal tomorrow, and what are some reasons for thinking it should be repealed?

This image shows a giant orange heart spray-painted on a cinderblock wall, with colorful background from the previous layer of graffiti. In the heart in giant shiny red bubble letters are the words "REPEAL THE 8th." Around the heart is the phrase "Bodily autonomy for all..."

In 2016, artist Dara Kenny painted this mural on a wall in Arklow, Ireland, in support of the Repeal 8 campaign, which aims to get rid of the Eight Amendment of the Irish constitution and decriminalize abortion. (Dara Kenny/Facebook)

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Tomorrow, 25 May, at 7am, the polling stations in Ireland open for a historic referendum. For the first time since its insertion into the Constitution, the Irish electorate has the opportunity to repeal the 8th Amendment and, subsequently, permit abortion in cases beyond ‘real and substantial’ risk to the life of the pregnant person.

What is the 8th Amendment?

The 8th Amendment of the Irish Constitution, passed by referendum in 1983, did something relatively rare – it ascribed a right to life to the ‘unborn’ (human foetus) equal to that of the pregnant person:

The State acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate that right.

A constitutional right to life places a significant obligation on the State. Furthermore, the 8th Amendment established a conflict between the rights of the foetus and the pregnant person because a foetal right to life must be vindicated within the body of the pregnant person. Abortion is only, therefore, permissible when a pregnant person’s life is at risk. This means that Ireland has one of the most restrictive abortion regimes in the developed world.

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Don’t miss Florencia Luna’s review of reproductive policies and LGBT issues in Argentina

Posted on May 22, 2018 by EditorMay 22, 2018

IJFAB Blog would like to draw your attention to this superb bit of work by Florencia Luna in the Canadian Journal of Bioethics, “From the Middle Ages to the 21st Century. Abortion, Assisted Reproduction Technologies and LGBT Rights in Argentina.”

Florencia Luna

Abstract

Despite “progressive” legislative changes concerning the LGBT collective and assisted reproductive technologies (ARTs) in Argentina, women and their sexual and reproductive rights have been overlooked. This article presents a critical perspective of some of these legislative modifications in the country. It addresses why some legislators and society are prepared to challenge a conservative or traditional approach for certain groups while ignoring others. Several factors are at play. There is no all-inclusive explanation. I stress that a striking double standard prevails in Argentina with respect to women and their sexual and reproductive rights. I also contend that powerful discrimination exists, in particular against poor women, who continue to suffer and are “punished” by the criminalization of abortion.

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Marie Claire magazine does feminist bioethics

Posted on May 18, 2018 by EditorMay 18, 2018

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.”

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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.

Questions and Sorrow and Regret and a Plan: Reflections on Medical Scarcity and Triage in the Gaza Strip

Posted on May 16, 2018 by Alison ReiheldMay 16, 2018

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

Posted on May 14, 2018 by Anna SwartzMay 14, 2018

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

Posted on May 7, 2018 by EditorMay 7, 2018

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.

Transgender residents of Wisconsin sue the State for Medicaid coverage of gender confirmation treatments

Posted on May 4, 2018 by EditorMay 4, 2018

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.

Should Institutional Review Boards charge a fee to review research proposals? WUSTL gives us a test case

Posted on May 2, 2018 by EditorMay 2, 2018

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.