Constraints on Medical Autonomy for Pregnant Women

I have written on diminished autonomy for pregnant women before for IJFAB blog in my piece,  Not All Objectification Is Sexual: The Return of the Fetal Container.   That piece, like Minkoff and Lyerly’s excellent 2010 piece in Hastings Center Report, dealt broadly with the choices which pregnant women are or are not constrained from making during their pregnancy, allegedly by state-imposed duties to their fetuses.  There is another aspect of constrained medical autonomy for pregnant women, however, and it has to do with the priorities of some physicians (and patients) with respect to how risk and other concerns are viewed. Continue reading

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Body Image, BMI, and the Continuing Problem of the Standards of Beauty

Feminist scholars have, for many years now, analyzed and interpreted the problems of body image that plague Western culture. Susan Bordo, Sandra Lee Bartky, Susie Orbach, and bell hooks are only a couple examples of prominent feminists who have examined the problem of how women understand their bodies, the cultural expectations for women’s bodies, and how these expectations produce a skewed body image that has little to do with “health.”

Similarly, what constitutes a healthy female body is also a contentious issue, as more recent explorations of health perceptions have shown us. A recent Tumblr post explicitly challenges some of the standard tools of Western medicine for determining healthy body weight.

american-women-who-all-weigh-154-pounds

Foz Meadows’s post, entitled “Female Bodies, a Weighty Issue,” made the rounds recently on social media. In her post, she argues that we as a society are still obsessed with thinness and ideal female body types that have little to do with lived reality. She explodes the concept of BMI as an accurate measurement of health, considers the problematic institution of clothing sizes for women, and examines the lack of linkage between weight and health. She concludes by arguing that “fat” simply means “not thin,” thus anticipating the criticism of many who are quick to point out that being overweight or obese can have detrimental effects on one’s long-term health. The issue is not about obesity; the issue, for Meadows, is that women who do not embody an ideal of female beauty (unnatural and unattainable for the majority of women) are often perceived as fat. Continue reading

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Turf Wars

The headline of a recent article on the Canadian Broadcasting Corporation’s website reads: “Labiaplasty defended by plastic surgeons.” The article discusses this often futile and possibly harmful genital surgery. There has been a rise in women requesting the procedure and … Continue reading

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E-Cigarettes: Is Liquid Nicotine Safe?

This version of this post originally appeared on the Albert Einstein College of Medicine’s blog.

The debate over e-cigarettes has been heating up. Are the smokeless, battery-powered, nicotine-dispensing devices a gateway to smoking for young people or a helpful way for smokers to quit? Public health experts can be found on both sides of the debate.

An article in the New York Times on February 22 cited two leading figures, Dr. Michael Siegler from Boston University and Dr. Stanton A. Glantz from the University of California, San Francisco. Dr. Siegler maintains that e-cigarettes “could be the end of smoking in America,” while Dr. Glantz contends that not only could they lure children into smoking, but they also could keep adults hooked on the habit. One problem with this debate is that there has been insufficient evidence to confirm or deny either of these claims.

That is beginning to change. One small study reported in JAMA Internal Medicine on March 24 found that e-cigarette use by smokers was not followed by greater rates of quitting or by reduction in cigarette consumption one year later. This finding appears to support Dr. Glantz’s concern. Although the authors acknowledge several limitations to their study, they argue that “regulations should prohibit advertising claiming or suggesting that e-cigarettes are effective smoking cessation devices until claims are supported by scientific evidence.”

A worrisome trend is an increase in the use of e-cigarettes among young people.  A study published in March 2014 in JAMA Pediatrics revealed that among teens in the United States, the use of e-cigarettes doubled between 2011 and 2012.  The study surveyed middle and high school students: 17,353 in 2011 and 22,529 in 2012.  One of the findings of this study is that use of e-cigarettes does not discourage, and may even encourage, conventional cigarette use among US adolescents. [Lauren M. Dutra and Stanton A. Glantz, Electronic Cigarettes and Conventional Cigarette Use Among US Adolescents: A Cross-sectional Study, JAMA Pediatrics, Published online March 06, 2014. doi:10.1001/jamapediatrics.2013.5488]

Risks of Liquid Nicotine

Even more troubling than the lack of significant evidence in support of opposing claims about the risks and benefits of e-cigarettes is the harm that can be caused by the liquid nicotine used in the device. Another article in the New York Times reported on accidental poisonings, especially among children, and cases involving harm to adults. In its liquid form, nicotine is a powerful neurotoxin that can be absorbed through the skin. The Times article cites toxicologists who warn that liquid nicotine poses a significant risk to public health.

What, if anything, should be done to minimize the risks of harm, especially to children?  Where are the parents in these tragic accidents?  Would it be sufficient to require warning labels on the containers of liquid nicotine available for sale?

Some producers are already using such labels voluntarily, but apparently that has not been successful in protecting adults or children from the harmful accidents that have occurred. The US FDA does not (yet) regulate e-cigarettes; the Times article says the agency plans to regulate but has not disclosed details. Given the many years that elapsed before the FDA began to regulate tobacco products in 2009, it may be some time before the agency has sufficient empirical evidence to justify its intrusion into the marketplace for these new products.

At the very least, we need public health announcements about the dangers of liquid nicotine—both when the product is inhaled and when it comes into contact with skin. One woman was admitted to the hospital with cardiac problems when her e-cigarette broke while she was in bed. To help in preventing inadvertent use by children, the childproof caps commonly used for all sorts of medications and household products are an easy fix. But beyond those initial steps, it remains unclear what else is warranted from a public health standpoint. Although commercial enterprises detest government regulation, the CEO of an e-cigarette company was quoted in the March 24 Times article as saying, “Honestly, we kind of welcome some kind of rules and regulations around this liquid.”

A principle of public health ethics, known as the precautionary principle, holds that “when an activity raises threats of harm to human health or the environment, precautionary measures should be taken even if some cause and effect relationships are not fully established scientifically” (Staff, Science and Environmental Health Network, January 26, 1998, Wingspread Conference on the Precautionary Principle). This rather formal way of saying “better safe than sorry” is a helpful warning, but fails to give clear guidance.

The options for a regulatory agency range from merely requiring warning labels to limiting what advertisements for a product can say to banning it altogether from the marketplace. Since the last option is highly unlikely in the case of liquid nicotine, we are left to ponder the best way to prevent harm to children and adult users.

It will be interesting to see where the FDA comes down on the issue. In the meantime, those who use e-cigarettes do so without sufficient scientifically based guidance.

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Sleep Donation

Karen Russell’s new novela “Sleep Donation” uses an interesting sci-fi setting to ask questions about consent, donating biological material, and the rights of neonates. Listen to her interview with Dave Davies on NPR’s Fresh Air

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Crowdsourcing Medical Decisions

Crowdsourcing medical decisions: Ethicists worry Josh Hardy case may set bad precedent.

 

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The Fat Drug

Hard to know where to start on this issue, given all the ethical ramifications, starting with questions about informed consent in the experiments on humans, the failure of government regulation over this new technology that has allowed it to become ubiquitous in the environment, and the possible implications for women’s well-being, given the worship of thinness. . . .

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Denying the Patient In Front Of You: Recent Studies of Transgender Patients’ Experiences in the ER Confirms Prior Results about Poor Treatment of Transgender Persons in Clinical Settings

Two studies which have recently hit the press reinforce a problem I have been considering for some time, namely the difficulties which transgender persons face in getting care. Herein, I will give an overview of these difficulties, the new studies, what they reveal about causes of provider’s behavior with respect to trans persons, and some brief recommendations for how providers can do better.

Transgender health advocates Sabrina Suico of the Couples Health Intervention Project and Brionna of the Mariposa project both work with services dedicated to improving the lives of transgender or gender-variant people of color. Image Credit: Aubrie Abeno, via mintpressnews.comTransgender health advocates Sabrina Suico of the Couples Health Intervention Project and Brionna of the Mariposa project both work with services dedicated to improving the lives of transgender or gender-variant people of color. Image Credit: Aubrie Abeno, via mintpressnews.com

In 2012, I presented a paper at the American Society for Bioethics and Humanities, “She Walked Out of the Room And Never Came Back…”, in which I discussed the case of a patient who had been denied care by health care personnel while visiting the ER for a broken limb before finally being seen by another provider. The first provider walked out in a huff after the transgender patient’s trans status became clear as the patient’s anatomy was revealed during a diagnostic procedure. After leaving the patient alone, in pain, with no idea whether to leave and go to another facility or wait, another provider came into the room and professionally and compassionately provided the necessary medical care. This, I found, was not uncommon. Approximately 1 in 5 transgender patients have put off preventive medical care due to experiencing, or fear of experiencing, discriminatory behavior directed at the patient by clinical staff. According to some figures, this rises above 1 in 4 (28%), and transgender persons report being denied care across every demographic but worst for transgender women, who were assigned male sex at birth, than for transgender men who were assigned female sex at birth. The fact that transgender persons experience difficulties with access to health care should come as no surprise. In 2011, the Institute of Medicine released a report which addressed the many ways in which poor access to basic medical care for transgender individuals is “due largely to social stigma” and “fear of discrimination in health care settings” as well as lack of employer-provided health insurance due to employment discrimination.

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A Silent Killer of Women — Suicide

From the NYTimes

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Recommended Reading: Andrew Solomon’s Far from the Tree

Knowing something about my work on ethics and atypical sex anatomies in children, several people have recommended Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity (2012). Each of the chapters is devoted to children with a condition or what might be described as a feature of identity that sets them apart from their parents. There is no chapter that focuses on children with intersex or DSD, but Solomon’s narrative can offer some important insight for parents of children with atypical sex anatomies.

Solomon is knowledgeable about intersex. In developing his project, Solomon writes in the introduction, he “talked to parents of intersex children who couldn’t decide in which gender to raise them.” It will be clear to readers familiar with the critical literature on atypical sex anatomies how Solomon’s analysis has been shaped by work such as Erik Parens’ collection, Surgically Shaping Children. It is unfortunate, however, that Solomon’s characterization of the challenge of intersex focuses on sex assignment. Solomon’s comment not only reinforces a misconception about what atypical sex is, but also fails to convey to his readers how varied (and indeed dissimilar) the different expressions of atypical sex are. And perhaps this is why Solomon didn’t include such a chapter: There are so many differences among the conditions and conventional treatments for DSD that devoting a single chapter to one condition—like congenital adrenal hyperplasia (CAH), which affects both genetically male and female children, but at birth results in atypical sex anatomies only in females—could not present a neat representation of the condition in a child and the challenges that parents of children with intersex face.

It would be a daunting task to capture in a single chapter such differences in experience. But perhaps what sets parents of children with atypical sex anatomy apart from those Solomon features is the fact that these parents have been given to understand that their child’s difference is “correctible” (in the case of normalizing surgery) or that it can be effectively concealed—from others and sometimes, from the child him or herself. Parents of children who are deaf might not appear to have a lot in common with parents of children who are schizophrenic, or who identify as transgender. What these parents have in common, as Solomon gently and movingly guides his readers to understand, is that they must come to terms with a condition they have no power to alter in their child.

Unlike the parents of children Solomon features who must learn to adjust to their child’s differences, to modify their expectations both of their children and of themselves, parents of children with atypical sex have most often seen their task as good and caring and responsible parents to consent to or pursue interventions they believe will spare their children the pain associated with not “being normal.”

Physicians have counseled parents of children with DSD to accept surgical normalization and to conceal their medical history from them in an effort to prevent children from assuming “identities” (intersex? queer? gay?), at odds with their parents’ expectations. This last point may be at the crux of what is challenging about atypical sex anatomies in children, namely the question of who the children are or will be.

We cannot decide who our children are, and this insight may be the most important one may we take from the stories Solomon tells in Far from the Tree. But we can, as Alice Dreger put it in Psychology Today essay, “start getting used to the fact that your children will change you as much as you change them.”

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