Hilde Lindemann (Michigan State) and Jamie Lindemann Nelson (Michigan State) discuss the discomfort some people feel about transgender people in spaces like locker rooms and other related issues on Public Radio’s Here and Now.
This is guest post by Cristina Richie (Massachusetts College of Pharmacy and Health Sciences).
In 2010 the National Institute of Health [NIH] came under fire for purchasing and distributing pornographic materials to fertility clinics (Associated Press 2010) highlighting an important but often overlooked partnership of pornography and the assisted reproductive technology [ART] business. Reports indicated that about one-third of fertility clinics centers in the U.K. provide pornography to clients. While the tax-payer supported bill for pornography was not incredibly high—an estimated £700 per year (Associated Press 2010)-—one clinic ‘spent more than £7,000 of public money on a media suite and DVD unit’ (Hill 2010) that allowed men to view pornography in a high-tech environment.
Fertility clinics are complicit with the heterosexual pornography business through their provision of explicit materials. The ART industry relies on pornography to obtain sperm from donors, men with infertile female partners, and men with slow sperm motility. This is highly problematic, as heterosexual pornography has been implicated with being antithetical to women’s welfare due to power imbalances.
Jackie Leach Scully (Newcastle University) on a widely reported clash between the rights of two different forms of diversity, those with respect to disability and those with respect to religion:
The limits to accommodation must surely be different for an impairment that, with the best will in the world, can’t be changed. We can respect faith-based positions on a variety of issues while still recognizing that, compared to disability, religion really is more of a choice.
Find the full piece at Impact Ethics.
You can find the table of contents at Project Muse. Editor Mary C. Rawlinson’s introduction, “Food, Health, and Global Justice,” is available to read for free. (Other pieces require a subscription.)
Seven philosophers weigh in at the Daily Nous on the occasion of the recent Daraprim outrage.
Today the BMJ published a re-analysis of the data in Study 329. The results of this study, funded by GlaxoSmithKline were first published in 2001 in the prestigious Journal of the American Academy of Child and Adolescent Psychiatry. That article claimed that the antidepressant paroxetine is safe and efficacious in the treatment of adolescent depression, leading to its widespread use across the globe. Subsequent investigation, culminating in today’s publication in the BMJ, shows that paroxetine is no more effective than placebo in treating depression in adolescents, but is much more harmful. The authors, led by Australian child psychiatrist Jon Jureidini, have gone to extraordinary lengths to secure access to and then reanalyse the original data, some 77,000 pages of it. Their forensic analysis shows just how the original paper managed to ‘prove’ the safety and efficacy of paroxetine – by using end points not specified in the original protocol and by coding away and ignoring side-effects. The full chronicle of the investigation of Study 329 can be found here. The website and articles are well worth a close examination.
In my view, this publication and expose is a ‘game changer’ for research ethics as it shows the perils of data secrecy and the way that it is well nigh impossible to challenge the results of randomised controlled trials without access to the original protocol and the data. And this raises a fundamental question for research ethics: How can it be ethical to approve research and enroll patients unless there is a guarantee of open access to the protocol and data? Without such a guarantee, we risk patients serving as little more than fodder for the marketing machinery of the pharmaceutical industry as trial results are manipulated and skewed to economic imperatives. We often justify enrolling patients in research on the grounds of the potential contribution to future knowledge – the research will help guide treatment for future patients, even if some of the trial patients receive placebo. This justification dissolves in the absence of guaranteed open access to data and protocol.
This research is both heartening and deeply dismaying. Heartening because it shows that it is possible for a small number of extremely motivated people (with an enormous amount of effort) to call to account research misconduct, and provide a clear recipe for avoiding future problems of this nature. It is dismaying because the ground has shifted in terms of losing (more/all) confidence in clinical research; and in the knowledge that there will never be enough motivated people to do all of the necessary reanalyses should investigators (both commercially and publicly funded) open up their data. This expose has cast a long shadow over all research findings.
However, a phoenix might rise from the ashes. The restoration of Study 329 could be a trigger to demand that open access become the new norm. Human research ethics committees (institutional review boards) could demand open access as a requirement for ethics approval. Only such a proposal might restore confidence in the clinical research enterprise, and thereby ensure that when patients enroll in research for the greater good, there is some chance of that good coming to pass.
CALL FOR PAPERS
Submissions to this issue are limited to 5,000 words. The deadline is October 1, 2015.
Susan Dwyer (University of Maryland):
What do bioethicists do? According to a recent Boston Globe op-ed by the Harvard cognitive psychologist Steven Pinker, they needlessly get in the way of saving and improving human lives by throwing up ethical red tape and slowing the speed of research, and in so doing, they undermine their right to call themselves ethicists at all.
Guest Post by Julieta Arosteguy (FLACSO)
In August of last year, after teaching my first and only bioethics class of the semester, I was fired from my teaching position at the National University of San Martín (Argentina). I was told by the program’s officials that the reasons for my dismissal were my atheist, feminist, and pro-abortion views.
Before I was fired, I had taught bioethics for four years as an Adjunct Professor at the Childcare and Parenting Program (Puericultura y Crianza) of the National University of San Martín. Every year, I got excellent evaluations from my students.
The semester before I was fired, however, I discussed for the first time the “F.,A.L.” ruling of the Argentinean Supreme Court. In 2012, the Supreme Court decided on a case of abortion for the first time in its history. In the “F.,A.L.” ruling, the Supreme Court interpreted the criminal law that prohibits abortion, stating that access to abortion should be considered a right for all women when the pregnancy presents some risk for the woman’s life or health, or when the pregnancy is the result of sexual abuse. The Court ordered that all obstacles that prevent access to safe, legal abortions be removed. (You may find the decision here.)
Teaching the “F.,A.L.” ruling and Argentinean law on abortion in a program dedicated to women’s reproductive health care was my contribution to removing obstacles for the access to safe and legal abortion. As I found out the following semester, FUNDALAM, the NGO in charge of the program, closely linked to the Catholic “Opus Dei” group, was not pleased with my decision.
However, firing a person for her religious and political views is illegal in Argentina, and I took the case to court. Although the case is not yet settled, I was granted a cautionary order that mandates my restitution. The judicial order was issued in December last year, but neither FUNDULAM nor the University of San Martin has complied with it. Continue reading
So, a few days ago, this happened:
Supermodel Natalia Vodianova has ignited a firestorm of discussion about the rights of the disabled in her native Russia after her autistic sister was kicked out of a Nizhny Novgorod cafe by the owner, who allegedly accused her of scaring customers away.
In an August 12 Facebook post, Vodianova wrote that her 27-year-old sister Oksana, who has been diagnosed with autism and cerebral palsy, and Oksana’s caretaker stopped at the cafe the previous day to seek respite from the heat.
After the caretaker ordered a snack for Oksana, Vodianova wrote, the owner of the cafe approached the two women and told them: “Why don’t you leave? You’re scaring away all of our customers. Go get medical help for you and your child. And then go out in public.”
In response to Vodianova’s mother’s attempts to intervene,
a security guard threatened to “call the crazy house” and “lock you in the cellar” if the two women did not leave the premises….After her mother left the cafe with Oksana and the caretaker, they were confronted by police who told them they were being “detained for minor hooliganism…”
So the federal Investigative Committee opened an investigation. Hands were wrung. Horrified-sounding words were spoken. Fine. But this does not ameliorate two terrible facts about Russia, and its treatment of disabled individuals:
1. Disabled individuals (and especially disabled children) have been excluded, isolated, and otherwise denied their full human rights before, and during, the communist regime: http://dsq-sds.org/article/view/936/1111
2. Disabled individuals (and especially disabled children) are not doing much better in post-communist Russia: http://www.rferl.mobi/a/26584457.html
The truth is this: Official policies allow for (or, at best, ignore) widespread abuse of the disabled, including physical and psychological threats and public humiliation. And for too long a time, the Russian public largely went along with the abuse; tapping into some of the darker aspects of Russian society, some enjoyed the ugly, oppressive displays. One can only hope that now, with the presence of social media that thus far has, at least in part, managed to evade even Putin’s iron grip on information, these displays are obscured neither by the iron curtain nor by the quiet approval of the locals, changing the situation for those most affected by this national disgrace. Sunlight being the best disinfectant and all….