Article from Dr. Laura Cabrera in November ‘Bioethics’ issue

Laura Cabrera photoAn article by Center Assistant Professor Dr. Laura Cabrera has been published in the November 2019 issue of Bioethics. The article, “A human rights approach to low data reporting in clinical trials of psychiatric deep brain stimulation,” advocates for “the importance of reporting clinical trial data of invasive procedures in highly vulnerable populations, such as psychiatric DBS trials.”

Abstract: The reporting of clinical trial data is necessary not only for doctors to determine treatment efficacy, but also to explore new questions without unnecessarily repeating trials, and to protect patients and the public from dangers when data are withheld. This issue is particularly salient in those trials involving invasive neurosurgical interventions, such as deep brain stimulation (DBS), for ‘treatment refractory’ psychiatric disorders. Using the federal database ClinicalTrials.gov, it was discovered that out of the completed or unknown‐status trials related to psychiatric DBS up to November 2018, only two had submitted results to ClinicalTrials.gov. These results suggest that, despite federal requirements to report clinical trial data, reporting on psychiatric DBS trials is problematically minimal. It is argued that a human rights approach to this problem establishes a legal and ethical foundation for the need to report clinical trial results in this area.

The full text is available online via Wiley Online Library (MSU Library or other institutional access may be required to view this article).

Bathrooms, Binaries, and Bioethics

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. Visit this page for more information.

By Jamie Lindemann Nelson, PhD

Bioethicists typically deal with the moral complexities that emerge when social institutions—the clinic and the lab, chiefly—try to fend off our bodily vulnerabilities or ease their physical and social consequences. Recently, however, major social institutions have acted to make some people’s bodily vulnerabilities harder to deal with, hampering their access to means of coping with them that otherwise are publicly available.

The vulnerability I refer to is the regular need to eliminate the waste our bodies generate; “some people” are transgender women and men, boys and girls; the culprits are a wide selection of American state legislatures. Spring 2016 may go down in the annals of infamy as the season when lawmaking bodies across the country became fixated on the subject of bathrooms. The South Dakota House of Representatives narrowly sustained the governor’s veto of a measure passed by large majorities in both legislative houses that would have forbidden transgender students to use bathrooms, locker rooms, and showers designated for use by members of the gender with which they identify. In Tennessee, a bill that extends the bathroom ban to public universities as well as middle and high schools unanimously passed out of committee. Briefly stalled due to public hearings at which transgender high school students eloquently testified, the bill was quickly revived and sent on, only to stall again; its future remains uncertain. Unwilling, perhaps, to encounter eloquent North Carolinian trans students, the legislature there called a special session to ram through a sweeping bill that undercut the ability of local governments to extend anti-discrimination protections to LGBTQ folks generally; this haste was prompted, apparently, by the specter of trans people being expressly welcome to gender-concordant loos in Charlotte. Unimpeded by vetoing governors or eloquent students, this measure is currently the law in North Carolina. Nor is this all. According to the Human Rights Campaign, 44 anti-trans measures are under consideration in 16 states.

The typical rationale for barring trans people from their lavatories is to protect privacy and safety. To speak gently, this is ill-considered: there is no reason to regard a transwoman as a particular threat to any other woman occupying the next stall. No cisgender man standing at a urinal has any special cause to fear the transman washing his hands at the sink. Any heightened danger of being menaced would run in the other direction: a transwoman forced to use accommodations designated for men might well have good reason to be concerned about her safety. Privacy is a more amorphous notion, but however it is meant, it seems unlikely to be furthered by forcing transmen to enter women’s lavatories, or forcing transwomen to use the gent’s.

Bioethicists, who generally favor clarity about risks and benefits as they concern bodies, should be among those pointing this out. They might also help spread the word that enforcing such measures heightens risks of pain, distress, and ill health to those who, during the course of a long work shift or school day, can’t bring themselves to use discordant facilities, or fear making themselves conspicuous by using whatever alternatives might be present. There is also disturbing evidence that barring trans people from facilities matching their gender identification contributes to their strikingly elevated suicide rates (Seelman).

But the matter doesn’t end with getting clear about who is more at risk than whom—if that were really at issue, none of these bills would have taken up any legislature’s time and money. What then is behind these efforts to crimp transpeople’s access to concordant lavatories, and thus to hamper their access to much of social life generally? A clue was provided by South Dakota state representative Stephen Haugaard. In a bravura performance of metaphoric derangement, Representative Haugaard called transgender a “virus that has broken out” across the nation, while also asserting that being transgender is a matter of decision. “When you feed the fire of this kind of confusion,” Haugaard said, “you’re going to add to the number of people who are going to make this choice.”

Not that these bills—which frequently stipulate that sex is determined by anatomy at birth, by chromosomes, or in accord with original birth certificates—need such dicta to reveal their intent; they do a pretty good job speaking for themselves. The language that blocks recognition of any kind of gender crossing makes it clear that the real target isn’t preserving anyone’s safety or privacy. The drive is to use the law, not only to limit trans presence in public spaces, but to fight the uptake and circulation of how transpeople understand themselves—in short, to delegitimize transgender people as such.

Anti-transgender laws are part of a general reactionary effort to hold certain people in the subordinate or frankly abject positions in which social traditions have assigned them—forced to give way on same-sex marriage, the imagined immutability of the gender binary is the new line in the sand. As bioethicists have noted, medical practices that engage trans people have played both sides of that line—both pathologizing and affirming the distinctive ways in which transgender constitutes an invitation to respond more richly to reality’s complexities. A challenge now for bioethics is to nurture the affirmative side of this legacy, helping to clarify for medical personnel and the public how what has been fancied a natural binary in fact is maintained by intricate expressions of social power. If bathroom access is where those who still root for reaction draw today’s line, let’s be sure that it is drawn in beach sand, and welcome the incoming tide.

jamie-nelsonJamie Lindemann Nelson, PhD, is a Professor in the Department of Philosophy at Michigan State University.

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