Cis, Trans, Gay, Straight: Being Called Out by the Doctor

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series

By Jamie Lindemann Nelson, PhD

A little story—it might be called a dramatization—to start: Approaching the third trimester of pregnancy number two, Maria is in for a routine exam. Everything goes as expected until her OB/GYN pauses, gathers herself, and asks, “By the way, Maria … and don’t feel that you have to answer if you don’t want to, but … you do think of yourself as a woman, don’t you … I mean, you … identify as a female gendered person … who … is mainly attracted to men, erotically?”

To say Maria is taken aback by these questions is to say too little; a word like “stunned” comes closer. How to make any sense of this? Has her doctor, who actually attended the birth of her child, had a psychotic break? Is she just trying to be funny? Did Maria just mishear? Or is this some politically correct silliness … does it having something to do with queer people?

Indeed so. The New York Times for this past May 29th reports that LGBT patients are generally willing to disclose their “gender identity and sexual orientation” to their health care providers. Based on research reported in JAMA Internal Medicine, only 10% of a national, randomized sample of lesbian, bisexual, gay, and straight subjects indicated that they would refuse to acknowledge their status; a related study of 101 transgender patients indicated that 90% believed that it was important for primary care providers to know their gender identity.

They are quite right: knowing whether or not a patient is transgender, whether or not they are straight, can sharpen a care provider’s focus. Further, LGBT health care disparities can be spotted and remediated more effectively. Both the National Academy of Sciences and the Joint Commission have endorsed soliciting such information.

Yet, if these results are accurate, LGBT folks should be congratulated not only on their appreciation of quality and equity of care, but also on their bravery. The National Center for Transgender Equality’s 2011 study of 6500 transpeople indicated that 19% were denied access to health care, 28% reported being harassed and disrespected by care providers, and 2% had actually experienced physical assault while seeking care.

Similar perils face LGB patients. A 2010 Lambda Legal study of nearly 5000 respondents roughly anticipated the National Center for Transgender Equality’s results for transpeople, and showed that matters are at least as dire for people with HIV. LGB people who are neither transgender nor living with HIV should not be sanguine—8% report being denied care because of being thought to be otherwise than straight.

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This “Transgender-Affirming Hospital Policies” document is available for download on the Human Rights Campaign website.

Perhaps these data no longer accurately reflect the reception of queer and HIV infected people by health care professionals. Yet there’s still reason for them to be wary—for example, a 2017 Human Rights Campaign Foundation report showing that only 61% of 901 hospitals had nondiscrimination policies that included both gender identity and sexual orientation. The Times piece mentioned “several studies” that say “providers feel uneasy about asking,” out of a reluctance “to make patients uncomfortable.” One hopes that their delicacy is informed by awareness of what LGBT folks might be uncomfortable about—as well as by these recent studies.

But if the studies draw a veil over LGBT fortitude, they also seem insensitive to how “do ask/do tell” policies could leave some cisgender or straight patients feeling deranged. Serious efforts to gather this information will mean that people generally will need to be asked about their sexual preferences and about which (if either) gender they happen to be. Should this become routine, that means that, at least in this particular health care context, queer identities aren’t simply being accommodated: they are being made normative.

We needn’t imagine this inquiry going on just as it did with Maria; her OB-GYN could stand a spot of training. The privacy of these disclosures matters too—it isn’t merely in health care settings that LGBT folks have reason to worry about their safety. Still, however conducted, however safeguarded, routine inquiry destabilizes abiding sources of certainty; neither the fact that Maria’s husband was present as she labored, nor even the fact of her laboring, ground the knowledge of identity a provider needs. Like those who have been relegated to the margins of sex and gender, Maria and all other cisgendered, straight patients will need to abide the question, even if asked discretely, even if they choose not to answer it.

The journalist and historian Elinor Burkett has claimed that unlike progressive movements championing African-Americans, those supporting transgender people have not been content to struggle against violence and discrimination. They have also demanded that women “reconceptualize themselves”—most glaringly by questioning whether having a vagina is necessary for being female. While women born with vaginal agenesis would likely have something to say to her, like Burkett, like Maria, many people will be unsettled by calling old certainties into doubt. But socially advantaged people who oppose injustice cannot simply assume that their world will maintain its proportions and just grow to accommodate those hitherto left out. Those who were excluded will have something to say about the arrangements.

Nor is reconceptualization confined to queer activism. When women’s suffrage was an open question, some women worried that wielding political power would change who women were, how they were thought of, and how they thought of themselves. They were right—and for that, we should all be thankful. Telling your health care provider whether you are cis-, trans-, or non-binary, whether gay, or bi, or straight, may seem a tiny matter in comparison, whose health care benefits may seem not worth the time, trouble, and upset they occasion. Yet in putting the powerful imprimatur of medicine behind the need to respect some of the deepest sources of human self-understanding, the time, the trouble, and the upset might be the most important result of the whole process.

Jamie Nelson photoJamie Lindemann Nelson is a Professor in the Department of Philosophy at Michigan State University. Dr. Nelson is a co-editor of IJFAB: International Journal of Feminist Approaches to Bioethics.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 6, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

More Bioethics in the News from Dr. Nelson: Bathrooms, Binaries, and Bioethics

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New article from Dr. Cabrera in ‘AJOB Neuroscience’

Laura Cabrera photoCenter Assistant Professor Dr. Laura Cabrera has a new article in AJOB Neuroscience, titled “Beyond the Technology: Attribution and Agency in Treatments for Mental Disorders.” This publication from Dr. Cabrera and co-authors Rachel McKenzie and Robyn Bluhm is a result of their S3-funded research project, “Psychiatric Interventions: Values and Public Attitudes.”

The full text is available online from Taylor & Francis (MSU Library or other institutional access may be required to view this article).

Learn more about this team’s research:

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Dr. Stahl presents at 2017 Summer Institute on Theology and Disability

Devan Stahl photoCenter Assistant Professor Dr. Devan Stahl recently attended the Summer Institute on Theology and Disability in Azusa, California, held June 5-8. Dr. Stahl presented at two workshops. In “Recovering Christian Charity,” she presented on the history of disability charity in American culture to understand why many disability advocates reject charity. The workshop offered possibilities for recovering the traditional understanding of charity within the church and challenged Christians to understand charity in ways that do not demean or dehumanize persons with disabilities.

In the second workshop, “Reflections on Embodiment and Disability Advocacy,” Dr. Stahl joined a group of panelists offering personal reflections on how their understandings of and relationship to their own bodies impact how they carry out their scholarship and advocacy work in disability. The workshop aimed to encourage disability advocates to pay attention to their own embodiment and experience, to think about how that connects to the work they do, and how to use one’s own experiences to make their work deeper and more helpful.

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Dr. Eijkholt presents at 13th Annual International Conference on Clinical Ethics Consultation

Marleen Eijkholt photoThe 13th Annual International Conference on Clinical Ethics Consultation (ICCEC) was held on May 25-27 in Singapore. Center Assistant Professor Dr. Marleen Eijkholt attended and presented on a neuroethics panel, “A Cross Cultural Examination of Pain: Conceptual, Practical and Clinical Ethical Challenges.”

Pain is a relevant clinical problem, but also a social construct impacted by culture, environment, and gender. As a result, pain is perceived, framed and treated differently across cultures. However, minimal literature exists on cross-cultural examinations of pain.

Dr. Eijkholt and collaborators Nneka Sederstrom (U.S.), Daniel Fu-Chang Tsai (Taiwan), and Yonghui Ma (China) explored various challenges in the framing of pain across cultures. By focusing on a specific case, the panel examined the meaning of pain, the various challenges of the pain discourse, and the varying approaches toward pain through a cross-cultural lens. They delved into the ethical, legal, and social issues around pain. Asking: what is the relevance of pain in the clinical setting, what (in)abilities do patients and surrogates have to address pain in the clinical setting, how is pain treated, and what concepts frame the importance of pain, they sought to compare and contrast different approaches to draw lessons for working in a cross-cultural context.

Dr. Eijkholt also presented a case study titled “Clinical neuroethics: Cracking brains and health care systems.”

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Transplant Headaches: Head transplant on the horizon

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series

By Marleen Eijkholt, PhD, LL.B/LL.M

Introduction
On May 1, 2017, the Daily Mail reported on a successful head-transplant involving rats, as a “practice run for [a] controversial human experiment.” Indeed, this run would seem timely and perhaps minimal pertaining only to rats, given the proposed timeline toward the first-ever human head-transplant (HHT). Some reports suggest December 2017 as the date for the HHT, while others report that December is unlikely, and that the procedure would have to be delayed.

With the first HHT on the horizon, guttural yuck-reactions, and references to the ethical questionability of this procedure abound. A famous ethicist suggested that the surgeon is “out of his mind.” But I am unsure if this rejection is fair. If we have allowed the development of kidney, heart, hand, face, uterus, and penis transplants, why would this new area of transplant medicine raise prohibitive concerns?

Several areas of ethical concerns have been identified, and I want to address three reflections briefly here. Although many more could be identified, including the concern that a ‘body transplant’ also means that its other organs cannot be used for other purposes, I will not go into these issues due to word limitations. I offer thoughts for further discussion, drawing on parallels from other controversial (surgical) interventions, i.e. stem cell interventions for spinal cord injury (SCI) and deep brain stimulation (DBS). Often ethics is seen as a prohibitive ‘science’ but I do not want to endorse this idea. Instead, I hope to ask how we can ensure that this development proceeds as reflectively as possible.

Background

operating room photo

Image description: two surgeons are shown in an operating room while performing a transplant procedure on a patient who is out of frame. Image source: Scott & White Healthcare/Flickr Creative Commons

The history of HHT up to this point is described in many places. In 2013, an Italian surgeon, Canavero, first suggested his willingness to do a HHT, causing outrage and interest. Canavero has given a TED talk in the meantime, published several manuscripts [3, 19] and protocols [1, 2] on the procedure. Initially, one Russian individual, Valery Spiridonov, came forward to undergo the HHT and is now considered as potentially the first patient, while others have started to line up. Spiridonov has a degenerative and incurable muscle disease (Werdnig-Hoffmann) and is confined to a wheelchair. Cost-estimates of the procedure include a 7.5-20 million dollar, 36-hour operation, with a team of 150 people. The community has expressed serious reservations about the scientific feasibility. Still, we read that the first head-transplant in monkeys occurred in 1970 and that several dogs and mice have undergone the procedure. These were mostly as proof of principle, and not focused on long-term survival. Currently, there is no substantial proof that the recipient can be ‘kept alive’ long-term.

Informed Consent (IC)
A primary concern is whether Spiridonov can offer informed consent. Given his vulnerability, suffering Werdnig-Hoffmann disease, and based on reports about what Spiridonov said, these concerns are real. Spiridonov’s desire is to be like the “first man on the moon,” generate knowledge for future generations, and that the HHT will help him. Hence, he seems vulnerable to therapeutic misconceptions and risk-mitigation biases, especially in the light of a surgical learning curve that will challenge the first HHT [10]. Spiridonov’s narrative refers to the first man on the moon—who successfully made it—failing to mention the others who did not make it. Another part of this concern relates to identity problems that transplant individuals might experience with an alien body (part), where HHT concerns a whole body and an irreversible transplant [17].

These areas of concern have been dealt with at length, in reference to transplants and other emerging (surgical) interventions. I do think these concerns can be addressed, provided a thorough shared decision-making process, like in DBS [7]. Why would it be different in the HHT context?

Necessary Evidence
It seems an incredible leap to move from rat experiments to human interventions, without bigger animal models. However, such leap is not unprecedented, and might not automatically be condemned. Geron, a company that injected stem cell derived products in the spinal cord of SCI patients, moved from rat trials to humans. They skipped large animal models in assessing feasibility. Their decision was met two ways. One set of arguments stated the unacceptability of this practice as humans would now be exposed to unacceptable risks, based on insufficient knowledge. Another set of arguments was perhaps less outraged, suggesting that animal rights arguments might favor such direct application. Sacrificing large animals could not always be justified, especially if evidence in large animals may still not apply to humans [9]. Would it be in the HHT case?

Medical Need
A final question is: How to go about the risk/benefit assessment for someone whose medical need is not immediately life threatening? Spiridonov does not suffer an immediately life threatening illness, unlike liver failure, so some might argue that the risk/benefit profile of this experiment is disproportionate. Aside from concerns about the patient facing risks, executing novel risky experimental interventions may entail a loss of trust in the field if they go wrong. We have seen this in the tragic story of Jesse Gelsinger, gene therapy trial participant. So, some could argue that Spiridonov’s medical need does not warrant a loss of trust in science. But in response one could propose that for a proper risk/benefit assessment, weighing many factors is required. We see that for many composite allograft transplant areas as well as for DBS, the focus is on improving quality of life, not providing a cure. References to medical need and life-saving interventions are social constructs. If interventions like penis transplants were justified and marked as life-saving, referencing suicide concerns, life-limiting conditions like Spiridonov’s condition could put these concerns into perspective.

Conclusion
Although HHT are a new transplant territory, many of the headaches are familiar ethical concerns to the domain of novel transplant medicine and emerging surgical interventions. I am unsure that HHT is very different than the first heart transplant, which was met with huge skepticism, involving concerns about survival, IC, and identity. Heart transplants have offered huge progress in medicine, by generating new knowledge and applications for patient well-being. What makes us say that this body/human head-transplant is going to be less of a revolutionary intervention, and should be stopped before it even begins?

Marleen Eijkholt photoMarleen Eijkholt is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Obstetrics, Gynecology and Reproductive Biology in the Michigan State University College of Human Medicine. Dr. Eijkholt is also a clinical ethicist at Spectrum Health System.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 22, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Chapter from Dr. Fleck published in ‘Cancer Biomarkers: Ethics, Economics and Society’

Leonard Fleck photoA chapter from Center Professor Dr. Leonard Fleck has been published in the book Cancer Biomarkers: Ethics, Economics and Society, published by Megaloceros Press. Dr. Fleck’s chapter is titled “Just Caring: Precision Medicine, Cancer Biomarkers and Ethical Ambiguity.” The book is edited by Anne Blanchard and Roger Strand.

From the Amazon description:

Cancer care is undergoing a shift from a ‘one-size-fits all’ approach to more personalised medicine. One way of personalising cancer treatments is through biomarkers: molecules or biochemical changes found in the patient’s tissues and body fluids. This book reflects upon the promise of cancer biomarkers and asks questions such as: How may the complexity of cancer biology impede the robustness of biomarkers in the clinic? How should one draw the line between the various sub-groups of patients for personalised treatment? How can one evaluate the cost-effectiveness and fairness of personalised cancer treatments? By bringing together authors from the fields of science and technology studies, medical ethics and philosophy, health economics and oncology, the book aims to give a critical yet accessible overview of some of the key social, ethical and economic issues that surround cancer biomarkers. “The book should be required reading for oncologists, medical students, graduate students and especially for those who make policy decisions regarding the use and reimbursement of cancer biomarkers.” – Bruce Zetter, Charles Nowiszewski Professor of Cancer Biology in the Department of Surgery, Harvard Medical School

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Pseudoscience and Measles in Minnesota

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series

By Hannah C. Giunta, DO, PhD, MPH

A recent measles outbreak in the Minneapolis-St. Paul, MN metro area is all over the news. More than thirty children have been treated at local hospitals, and at least 50 measles cases have been confirmed. The local Somali immigrant community has been hardest hit in large part due to their low vaccination rates. Commentators have demanded a variety of measures to control the vaccine-preventable disease, including enhanced border security. However, there has been less coverage of the outbreak as evidence of systemic social injustice.

Indeed, no matter what ones views are on compulsory vaccination, Somali parents’ vaccine refusal is not a case of informed, empowered parental choice but one of disadvantage and exploitation. The Somali immigrant community has been targeted by anti-vaccine activists spreading scientifically suspect information. Activists have taken advantage of an as yet unexplained increased rate of severe autism (but not autism in general) in the Somali community, encouraging parents not to vaccinate while spreading long debunked claims about the link between vaccination and autism. Realizing that internet rumors were not effective, activists have taken to personally visiting families and warning them about the dangers of vaccination. Yet, there is a real temptation to place some of the blame for the epidemic on Somali parents. Even commentators who rightly place blame on the anti-vaccine activists and declare the situation quite literally “a natural experiment” do not take the extra step of calling activists what they really are: gamblers and fraudulent pseudo-scientists willing to bet on the lives of disadvantaged children. This is not a case about free speech or poor parental decision-making; rather, it is a case of advocates conducting a so-called “natural” experiment where they stand to possibly gain the benefits (i.e. possible support for their cause) without taking on or acknowledging any of the risks faced by their subject-victims. The activists are guilty not just of being ill-informed and having dubious goals but also of perpetrating a larger social injustice.

While people certainly have the right to free speech and we all have a responsibility to evaluate the information presented to us, anti-vaccine advocates in this case chose to target a vulnerable population and to take advantage of individuals’ lack of empowerment. Of course, they did not set out to conduct a classic scientific experiment, but they are certainly still guilty of participating in a type of experiment. Some might say that the activists were just trying to help Somali families because they sincerely believe in a link between autism and vaccination. Others would argue that these individuals are not qualified scientists and were not performing research. But, the activists’ project was more devious than misinformation. The activists sought to target a minority community, take advantage of a medical puzzle, keep community members in the dark about their true objectives, and to recruit participants into a risky gamble where “benefits” primarily accrue to the activists themselves. After all, if the activists could point to any decline in the autism rate (regardless of causation) or show the public that vaccine-preventable infections are simple childhood illnesses from which children recover without incident, they would have more “data” to support their cause. The very fact that parents believed the activists likely lent more credibility to the anti-vaccine crusade in populist minds. If enough people believe the message, surely there must be something to it?

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Image description: a baby is in the hospital with measles in the Philippines. Image source: CDC Global/Flickr Creative Commons

The social injustice implications of a pseudo-research paradigm come into focus when we consider three major aspects of the case in question. First, the activists exploited their own relative privilege by providing biased information. There is no way that individuals engaged with the anti-vaccine campaign are unaware of vaccine-preventable diseases and the risks they present. They simply choose not to focus on those risks. They so strongly support their own hypothesis that they believe it to be true despite evidence to the contrary, much like a researcher might believe that nothing could possibly go wrong in an experiment. Anti-vaccine activists usually have access to many sources of information and thereby a certain degree of epistemic privilege. They have socioeconomic resources to travel to ethnic enclaves and meet with Somali families. On the other hand, the Somali community in Minnesota continues to struggle with poverty, unemployment, and related social ills. Somali children are already at-risk for poorer health outcomes, but the activists did not consider this relative health disadvantage.

Secondly, the activists maximized their own benefits while placing all of the burdens on the Somali children. The segregation of poor Somali immigrants into certain ethnic enclaves virtually insures that children, including the activists’ children, outside these neighborhoods face much less risk of illness. Should there be a serious outbreak, Somali children would bear the burden, not the activists’ children. The Somali community would also be blamed for not vaccinating their children, absolving the activists’ of responsibility through a leveraging of their privileged social position.

Lastly, even with obvious evidence that the Somali community is suffering a measles outbreak, activists have failed to reach out and attempt to retract their message. Their pseudoscientific project continues unabated. They cloak themselves in the language of science while allowing a natural experiment to run wild and harm innocent children. Clearly, they believe their agenda and hypothesis about autism causation are more important than the lives of innocent children. Measles does kill, and over 30% of children will experience one or more complications, including diarrhea and dehydration, pneumonia, and encephalitis. Perhaps, if anti-vaccine crusaders wish to engage in pseudoscience, we should hold them to the standards and responsibilities of real medical scientists, including the wrongful death of any children who succumb and the continuing expense of measles-related complications. You can’t yell “fire” in a crowded room if there really isn’t a fire, and activists have crossed a line and are doing just that. We, in the name of equitable health outcomes, need to remind activists that words do matter and their experiment has failed.

hannah-giunta-2017-cropHannah C. Giunta is a May 2017 graduate of the Michigan State University DO-PhD program. She received her MPH in May 2015 and her philosophy PhD in May 2016. Dr. Giunta is an incoming Mayo Clinic Pediatrics Resident.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 1, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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