Being Vulnerable

This article focuses on the positive aspects of being vulnerable. As the author points out, the state of vulnerability is taken as one that should be avoided; we do not think that being vulnerable can be a positive state. However, Goldstein explains that by learning “to intentionally pay attention to our moments of vulnerability, without judgment, and meet it with a curious and caring awareness, we can build that into our hippocampus, and make it readily retrievable when we need it most.” This targets an audience facing what I would call `everyday vulnerability’ or the basic vulnerability of the human condition (for a systematic discussion of vulnerability see IJFAB 5.2). That is, those of us living in a fairly secure and safe environment. Even if the target audience is a privileged one, I believe Goldstein is highlighting important findings that could be used in a clinical setting to treat a broader population.

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EPA Dramatically Weakens Radiation Protection

Notice the special jeopardy for women and children, but unconscionable in any case:  EPA Dramatically Weakens Radiation Protection

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Twelve O’Clock and All is Most Decidedly Not Well: UNICEF’s Report on Child Well-Being in Rich Nations

UNICEF’s 2013 comparative report on child well-being in rich nations, AKA the Innocenti Report Card 11 (see page two of the report for a handy visual summary of findings) deserves our consideration. The news is Not Good for children in some of the richest nations amongst the group:  the U.S., for instance, ranks with a number of rather worse-off—by GDP—Baltic nations.  Geography also is no clear indicator: whereas the U.S. comes in 26th overall out of 29, fellow North American nation Canada comes in middle-of-the-pack at 17th.  The top five in order are Netherlands, Norway, Iceland, Finland, and Sweden.

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HIV acquisition higher in young Ugandan women than in young men

A recent study of HIV infection in Uganda revealed that young women are much more likely than young men to become infected with the AIDS virus.  Although previous studies have documented the higher proportion of young women than young men in sub-Saharan Africa who are HIV-infected, this study is one of the first that looked specifically at factors contributing to acquisition of the virus.  The published study reports that “Among young women, HIV prevalence in 2011 was 2.8% in 15-19 year olds and 6.3% in 20-24 years olds. HIV prevalence was 1.1% in men 15-19 years old and 3.2% in men 20-24 years old.”  The study found that gender disparity was greatest in 15-19 year olds, with the incidence in women more than 4 times greater than in men.  Interestingly, among young women who were formerly married, there was an increased risk of HIV acquisition compared to currently married women, in which the risk was decreased.  Being a student was also a factor contributing to decreased risk.  Gender disparities decreased with increasing age, as HIV risk increased as men got older but not with increasing age in women.  The article cites a recent qualitative study of young women in the same region of Uganda, which revealed that previously married women are more likely than their married or never married counterparts to have had multiple partnerships, to communicate poorly about HIV with sexual partners, to have experienced domestic violence and infidelity, to experience loss of family financial and social support, and to rely on partners for financial support.

Uganda

The results of this study are not surprising.  It has been known for some time that young African women are at greater risk for HIV infection than men in the same age range.  Yet the importance of this study lies in identifying specific risk factors.  Perhaps the most useful going forward is the finding that being a current student decreases risk of HIV.  The article notes that a low proportion of youth are enrolled in school, and suggests that “innovative conditional cash transfer interventions and others that encourage school retention appear warranted.”  But what kind of policy or other remedy can help to lower the incidence of HIV acquisition in previously married young women?  This is clearly a situation that demonstrates the need for empowering women.  It would be interesting to learn whether any women’s NGOs in sub-Saharan Africa are dedicated to providing support for young women with the risk factors for acquiring HIV infection identified in this study.  Here, as in any other situation in which gender disparities in health status exist, there is an injustice in need of a solution.

The abstract can be found here. The full article can be found here.

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Obama and Agribusiness

Recently, President Obama signed a $3 billion deal with agribusiness to “invest” in agriculture and food in LMICs.  The New Alliance for Food Security and Nutrition advances the same collusion of global corporations, states, and international agencies, such as the World Bank, that has dispossessed rural farmers, turned food into a commodity, and exacerbated poverty, gender inequity, and morbidity around the globe.

Land policy under the Alliance’s “development strategy” favors big farms and industrial food.  As the world’s small farmers are mostly women and women remain overwhelmingly the primary agents in feeding the men and women of earth, the global expansion of agribusiness affects them differentially, imperiling their fragile social and economic independence.

The White House website, in stating the aims and principles of the Alliance, insists that it “recognizes and will act upon the critical role played by small farmers, especially women, in transforming agriculture and building thriving communities,” but these women appear to have no role in the decision-making that will so affect them, nor are their interests central to the policies and plans articulated by the Alliance. It aims to “increase the range of financing options and innovative risk mitigation tools available to smallholder farmers and medium-sized agribusiness,” but the opportunity to buy and sells futures in a global market is unlikely to benefit these women.  It is more likely that the flow of global capital will bypass them, just as they are absent from decision-making.  The policies of the Alliance effectively marginalize these women and their knowledge, rather than making the ethical, environmental, and economic value of their sustainable farming and local food practices central to its strategic plan.

President Obama recently spoke about the importance of “having a seat at the table.”  Global justice and global health cannot be promoted by the agribusiness that threatens them. Ethical food requires that advocates of local farming and food justice have a seat at the table. Rather than colluding with Pepsico and Monsanto to expand their markets, President Obama could collaborate with champions of small farmers and sustainable agriculture to boldly lead states and international organizations to invest their billions in local food and local agriculture, instead of the global corporations and agribusiness that create economic dependence, environmental hazards, and disease.

The food produced by agribusiness is nutritionally corrupt, ethically corrupt, and environmentally corrupt. Our dependence on it is neither necessary, nor sustainable. If we don’t eliminate agribusiness and begin to feed ourselves differently, we will continue down a deadly path of pandemic disease, environmental degradation, and social injustice, but not for long.

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Notes on Suicide

Notes on Suicide: Current Rates and History
Image source: www.bestmastersincounseling.com

Link courtesy of Frida Jackson

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Lessons from Ruby: In Memoriam

May 27, 2013

Ruby’s passing immediately preceded the announcement of the suit filed against South Carolina on behalf of the eight-year-old who was, like Ruby’s daughters, subjected to surgeries to “normalize” atypical sex anatomy, or what is known as an “intersex” body.  I believe she would have celebrated the news of the lawsuit by Advocates for Informed Choice and the Southern Poverty Law Center. I thank her daughters for allowing me to share this essay.

May 9, 2013

The woman I called “Ruby” died this week. Her experiences and example have been central in my thinking about the ethical problems raised by the medical management of children and young adults with atypical sex anatomies over the last fifteen years.

Ruby was the mother of two children born in the 1960s, each of whom went into adrenal crisis shortly after she brought them home from the hospital.  Both had been announced boys when they were born, and both were reassigned as girls after doctors came to understand they were genetic females with congenital adrenal hyperplasia (CAH).

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Eden Foods and birth control

Eden Foods, which specializes in natural and organic foods, takes its commitment to “the natural” very seriously. It has sued the Obama administration to get an exception from the mandate to cover birth control in its employees’ health insurance plan, on the grounds that contraception involves “immoral and unnatural practices.”

In an interview with Salon.com’s Irin Carmon, the company’s founder and CEO, Michael Potter, seemed confused about how procreation works, saying that he wasn’t “qualified” to have opinions about “issues that are purely women’s issues” (italics mine).

Ultimately, though, Potter believes that the issue isn’t about procreative freedom, but about financial freedom and individual choice. He says, “I don’t care if the federal government is telling me to buy my employees Jack Daniel’s or birth control. What gives them the right to tell me that I have to do that?” Eden Foods’ customers appear to agree that it’s important to exercise individual choice; the article reports that the company’s Facebook page is now full of comments that promise to boycott its products.

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DSM Lacks Scientific Basis

Thomas R. Insel, M.D., Director of the National Institute of Mental Health, declares that the DSM 5 lacks scientific basis. The world’s largest funding agency for research into mental health will no longer fund projects that depend exclusively on DSM criteria. Is biological psychiatry a better alternative?

Editor’s Note: For more on related topics – please see IJFAB vol. 4, no.1: “Feminist Perspectives on Ethics in Psychiatry”

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Is the discourse of human rights counterproductive?

The UN and UNESCO spend enormous energy and resources in promulgating declarations of rights that are so abstract as to have little purchase on real social inequities. The declarations regularly fail to criticize the structures of discrimination that perpetuate the political, economic, and social subjection of women.  The Convention on the Elimination of All Forms of Discrimination Against Women allows States to sign “with reservations.”  Multiple signatories take exception to articles guaranteeing women’s freedom of movement, equality before the law, or equal rights in marriage. Saudi Arabia, where women can neither drive, nor vote, and are legally treated as minors, is a signatory.  Does the document protect women or sanitize regimes where women do not enjoy even basic freedoms?

 Women gather to see a community health worker in Bhaishahi village, Bardiya, western Nepal, June 2012. Photograph: Suzanne Lee for the Guardian


Women gather to see a community health worker in Bhaishahi village, Bardiya, western Nepal, June 2012. Photograph: Suzanne Lee for the Guardian

Attempts to include explicit reference to women’s rights in UN documents are regularly met with charges of Western imperialism and impassioned defenses of “local values.”  Bioethics needs to develop a more robust defense of truly universal values, like freedom of speech and movement, as well as a better articulation of human values that emerge out of women’s experience to meet the backlash reported here.

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Dan Markingson: a study in research misconduct

As someone who has worked in research ethics for many years, I feel that I have a pretty good understanding of how and where things go wrong in the research ethics review process. Such a process can never be perfect – human judgment is involved and there will inevitably be problems that slip through the net. However, the events surrounding Dan Markingson’s recruitment into an industry-sponsored trial of Seroquel (quetiapine) and his subsequent death are less an issue of what slips through the net and much more an indictment of the corrosive powers of commercial interests which make a mockery of the safety net of human research ethics review.

Briefly, in November 2003 a mentally ill young man named Dan Markingson was recruited by psychiatrists at the University of Minnesota into a profitable, industry-funded study of antipsychotic drugs. His doctors used the threat of involuntary commitment to force Dan, who was mentally incapable of giving informed consent, into the study over the objections of his mother, Mary Weiss.

For months Weiss tried desperately to get him out of the study, warning the psychiatrists that Dan’s condition was deteriorating and that he was in danger of killing himself, to no avail. On May 8, 2004, Dan committed suicide.

Carl Elliott has been writing on this case for a long period, as has Howard Brody.

I recommend their excellent analyses: Carl Elliott, “Making a Killing,” in Mother Jones, this piece by Howard Brody, and finally a referenced summary of the Dan Markingson investigation with links to court documents can be found here.

Finally, while I am ambivalent about the plethora of online petitions that come into my email inbox on a daily basis, I feel that this is one that deserves support. Mary Weiss (the mother of Dan Markingson) and others have started a petition to Minnesota Governor Mark Dayton, asking for an external investigation into the events surrounding Dan’s death.

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Who is cancer prevention for, anyway?

In the era of biocitizenry—when how you manage your medical risk is part and parcel of good citizenship—identity is a crucial mediator. Who you are is who you are like, and who you are like is whose narrative you can slip into: celebrity greases the deal. Whether that narrative is a comfortable glove that fits you just right, or a bus you jump on in a hurry, only to realize later that it took you just where you needed to go—or in the opposite direction—may be both a metaphysical question, and one with real consequences.

Angelina Jolie’s revelation in the NY Times of her carrier status for the BRCA mutation and of her choice of prophylactic double mastectomy was well-measured. She highlighted several important facts that frame the diversity of people’s experience and choices to set a context for her own moving personal narrative, such as that the BRCA gene mutation is responsible for a small share of breast cancers, that access to the test is hindered by its cost (Myriad’s patent as the most significant driver of that cost went unnamed), that the biggest disease burden is borne in lower-income countries, that the choice of approaches to prevention is personal and best discussed with your physician. Her physician blogged the treatment regime, but only after the news cycle and blogosphere were forced to content themselves for a day with the policy issues of patents (read Leila Jamal at The Berman Institute’s Bioethics Bulletin on the Myriad patents and the case before the Supreme Court), access (read s.e. smith’s harrowing account at xojane of knowing her BRCA status but being unable to afford preventive treatment), and what may have been the source of her self-reported 87% lifetime risk of breast cancer (Tiffany O’Callaghan interviewing Allison Kurian at The New Scientist), as well as the misogyny flung Jolie’s way (you may want to skip the tumblrs filling with variants of the “poor Brad” meme from twitter).

s.e. smith

Most women choosing double mastectomy as a prophylaxis for breast cancer are not women with the BRCA mutation. If there were a sweepstakes for bravery, Jolie’s worthy competitor would be Peggy Orenstein, who wrote two weeks ago in the NY Times Magazine about how her advocacy for early detection via mammography screening was transformed as she came to understand the depth and extent of breast cancer overdiagnosis. The issue of overdiagnosis, to be clear, isn’t about the distress and uncertainty that comes with false positives. It’s about unnecessary medical treatment: surgery, radiation, and chemotherapy for breast cancers that would never have killed if left alone. The recent Canadian Task Force on Preventive Health Care update of the similar US body’s guidelines quantifies overdiagnosis for women undergoing screening in their 40s as 10 cancers treated unnecessarily for every life saved. Jolie faces visceral misogyny from her so-called fan base; Orenstein faces the ire of the screening advocates. I’m not sure which is worse.

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