Notes on Suicide

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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).
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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. WHAT EXACTLY SHOULD A PERSON LOOK FOR? regencygrandenursing.com online cialis is a cure for erectile dysfunction. It is necessary pfizer viagra pharmacy to know the category the doctor you are looking for falls in. In cheap levitra regencygrandenursing.com this case, the tripeptide’s signal is acting on the arterial walls. This is the discount viagra india recipe for success. 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


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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.

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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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Lawsuit Filed Against South Carolina Alleging Violation of Child’s Rights

This week Advocates for Informed Choice and the Southern Poverty Law Center, with the help of two private law firms, filed what promises to be a groundbreaking lawsuit.  According to the press releases, “M.C.,” a child adopted as a toddler in South Carolina, had been born with atypical sex anatomy and assigned female.  Now eight years old, M.C. has rejected his assignment, and identifies as a boy.  Like a similar case of sex reassignment in Colombia that led that nation’s highest court to issue of the first of what would be, over 1999-2000, a series of decisions prohibiting unnecessary normalizing surgeries and specifying the limits of parental consent to such surgeries, the case could set a new precedent regarding the performance of normalizing surgeries in the US.

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Living with Dying

I didn’t mean to write about death in my first blog for IJFAB, but it is too much on my mind to ignore. A close and valued friend finally succumbed to cancer, experiencing not the several months of life that she, and I, believed were left, but falling away in a matter of just a few short weeks. Before I last left the country (I work abroad) we had joked about ‘hope and recovery’ – even knowing the latter would never happen – and wondered whether a mutual friend, a documentary maker who has filmed extensively in hospices, would be interested in working with Gill to record the final months. We were all involved in a funded project called Living with Dying and it seemed appropriate, as good academics, to turn our concerns to didactic purposes. In our exchanges of emails whilst I was away, Gill never ceased to think strategically about future possibilities and her last mail to me – sent the day before she lapsed into semi-consciousness – expressed real disappointment at the failure to secure a further grant. When I returned to the UK 2 days later and phoned to arrange a visit, a young doctor came on the phone to gently tell me that Gill had died a few hours before. I was very shaken but immensely grateful that she had not cited patient confidentiality as a reason to withhold the news. It is always uncertain being a friend rather than family, and I wish the putative hierarchy were more often sidestepped.

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The Luck of the Draw: The Fiscal and Moral Confusion of American Hospitals

The fact that Americans, without any increases in quality or quantity of services, pay much more for medical care than anyone in “peer” nations (and elsewhere) is something that is, outside of certain sociopolitical circles,  no longer up for debate.

It is also most likely not surprising that health care bills are among the leading causes of bankruptcies and other kinds of financial disasters for Americans, nor surprising that millions of Americans are still uninsured or underinsured.  And yet, the complicated, overly bureaucratic, profit-centered, and opaque chaos that too often passes for medical care within the United States has one more surprise in store.

A few days ago, the Centers for Medicare and Medicaid Services released a database that, for the first time, makes public the amounts the majority of American hospitals charge for the one hundred most common procedures.  As Jeffrey Young and Chris Kirkham report in The Huffington Post:

“the Obama administration shared the data in advance with The Huffington Post, The New York Times and The Washington Post. What emerges through a preliminary analysis is a snapshot of an incoherent system in which prices for critical medical services vary seemingly at random — from state to state, region to region and hospital to hospital.”

For example, Young and Kirkham note that “[w]hen a patient arrives at Bayonne Hospital Center in New Jersey requiring treatment for the respiratory ailment known as COPD, or chronic obstructive pulmonary disease, she faces an official price tag of $99,690.  Less than 30 miles away in the Bronx, N.Y., the Lincoln Medical and Mental Health Center charges only $7,044 for the same treatment, according to a massive federal database of national health care costs …”
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Why is this happening?  After all, in a largely market-driven health care industry, ought there not be at least a market-based justification for these discrepancies?  Yet the writers suggest that there are neither explanatory reasons nor regulating principles for these staggering differences in cost, which hospitals have, until now, kept well- hidden.  In fact, even the argument that differences in local economies and labor costs have something to do with the extreme price fluctuations fails:  a lot of the significant price differentials are geographically and socioeconomically proximate.

Who is harmed?  The category of individuals most harmed by these inconsistencies is, more or less, everyone who is not covered by the Veterans Administration system, Medicaid, or Medicare (which either have discounts set by law, or else negotiate for lower prices for prescriptions and medical treatments).  Health insurance companies simply base their costs on the prices established by the hospitals without much further inquiry, forcing those fortunate enough to be insured to pay more for their benefits, while those without any insurance at all are charged the astronomical, and, as we can now see, disturbingly varying and unreasonable sticker prices  –  which, of course, most individuals are simply unable to pay.

This leaves me with several questions:  Why is there not some kind of institutional accountability for both private and public hospitals for how, and how much, they charge for services?  In an era of the internet and Wikileaks, why, and by whom, have they been allowed to continue with these unjustifiable practices that seem to belie all claims of either market-based justifications or, frankly, of rationality itself?  Importantly, how have their actions remained this kind of a sick, and well-guarded, trade secret?  And, of course, now that we know  —  what is next?

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CFP: Special Issue on Transnational Reproductive Travel

Vol 7, No. 2: Special issue on Transnational Reproductive Travel

The deadline for submission for this issue is June 1, 2013.

Guest Editors: Françoise Baylis and Jocelyn Downie

The transnational fertility industry is a multibillion-dollar global industry that continues to grow exponentially, with few guidelines or regulations. Indeed, it has been suggested that “internationalization has made oversight laughable… regulators are dogs with no teeth” (Carney 2011).

At the heart of this industry are women who sell their ova and gestational services. Typically these women – poor women or immigrant women in low or middle income countries or students in middle and high income countries – have few options to earn the money they need to live and pay their bills. The purchasers are single women or men and heterosexual or homosexual couples who travel abroad to reduce costs, to access better quality care, to access medical resources otherwise not available in their home country, to reduce wait times, to avoid legal prohibitions on particular services or to avoid legal or professional prohibitions on access by particular demographic or social groups.

Arguably, this industry flourishes, in part, by capitalizing on differences in legal regimes, differences in wages and standards of living, and differences in cultural and ethical norms. A feminist perspective calls into question the role of exploitation, coercion, vulnerability, and inequity in transnational reproductive travel (at least as it is currently practiced and is being developed).

The aim of this special issue is to make a positive contribution from an explicitly feminist perspective to the ethical debates surrounding transnational reproductive travel. Contributions analyzing aspects of the debate that, to this point, have received insufficient, if any, attention are particularly welcome.

The Guest Editors invite submissions on any topic related to transnational reproductive travel.

Potential topics for this volume include:

  • Does transnational reproductive travel increase or threaten women’s autonomy? Does reproductive outsourcing to low and middle income countries benefit women by increasing employment opportunities or further subjugate women who are at increased risk of exploitation and coercion?
  • How does transnational contract pregnancy increase or cloud our understanding of vulnerability? What is the same and what is different, from a feminist perspective, about the vulnerability of those who purchase gestational services and the women who provide these services?
  • From a feminist perspective, what rules should govern the import and export of reproductive tissues whether for reproductive or research use?
  • When the motivation for transnational reproductive travel is to avoid domestic legal or professional ethical constraints, should health care providers in the traveler’s home state facilitate transnational travel with a view to promoting access to safe and effective interventions, or should they actively discourage such travel?
  • Should women be compensated for their reproductive labour? If so, what would be a fair wage for providing eggs or 9 months of gestational services?
  • National self-sufficiency and the harmonization of laws are two strategies that have been suggested to reduce the need for individuals and couples to travel abroad. How might either of these strategies be evaluated from a feminist perspective?

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Authors who plan to submit papers are encouraged to contact the Guest Editors prior to submission.

All papers must be submitted in IJFAB style. Please consult this page for style guidelines.

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War Crimes That We Should Be Discussing More Actively

From Democracy Now – Ten Years Later, U.S. Has Left ED therefore cripples an adult individual from http://www.midwayfire.com/opdiv.asp levitra fast delivery leading normal life. viagra 100 mg Taking Kamagra soft tabs with water or other beverages is not needed as it can be consumed orally and there are many brands that produce erectile dysfunction as a side effect. This pill can be purchased online from genuine resources online prescription cialis to avoid fake claims and scams. Or, choose a compound like equipoise to use instead generico levitra on line of Nandralone Deconate. Iraq with Mass Displacement & Epidemic of Birth Defects, Cancers

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