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China’s Terrible Transplant Secret

9 May, 16 | by BMJ

Guest Post by Wendy Rogers
Earlier this year, a Malaysian politician, Datuk Bung Moktar Radin, travelled to China to receive a kidney transplant.  The details are scanty. There is no mention of the source of the kidney that the Malaysian MP received.  Reports of foreigners travelling to China for transplants rarely make the media, yet they may be an important link in trying to untangle the secrets of China’s secretive transplant system.

Back in the early to mid-2000s, Chinese hospitals brazenly advertised on the internet for foreign customers, offering kidney, liver and heart transplants with astonishingly short waiting times of 2-4 weeks.  In contrast, patients in countries like Australia, the UK, and the US typically wait years, with many dying before an organ becomes available.  Despite initial denials, Chinese officials eventually admitted that virtually all their organs were sourced from executed prisoners.  Using executed prisoners as organ donors is uniformly considered unethical because of concerns that prisoners may be manipulated or coerced rather than being genuine volunteers.  Voluntary donation is at the heart of most transplant programs world-wide, although there are exceptions.

Violating this ethical principle by selling organs from executed prisoners to foreign (and Chinese) patients might seem enough to make China a pariah in the international transplant community.  But this is only one part of China’s terrible transplant secret. Reputable international investigators have gathered evidence that Chinese prisoners of conscience, mainly Falun Gong practitioners, Uyghurs, house Christians and Tibetans, are murdered for their organs.  Falun Gong practitioners, who make up the bulk of the millions of Chinese citizens in “re-education through labour (laojiao)” camps, are subject to medical tests to examine the health of their transplantable organs.  This process creates a living organ bank where foreign patients and wealthy Chinese citizens can be matched to potential donors, who are then killed on demand so that their organs can be transplanted. This reverse matching process guarantees a suitable organ within a very short waiting period. more…

Special Obligations: What Can Physicians Learn from Parenting?

6 May, 16 | by bearp

Guest post bJon Tilburt and Baruch Brody

Editor’s note: this post introduces a recent paper by the authors now in press at the Journal of Medical Ethics: “Doubly distributing special obligations: what professional practice can learn from parenting

Gaps between our ideals and our behavior are common. Sometimes what we say we believe and what we actually practice differ because we fail to live up to what we actually believe. Doctors who are disingenuous, selfish, corrupt, or duplicitous in their actions must own their failures to live up to their said ideals. Other times we use oversimplified language to describe a said ideal because the wording feels right even when that language is not strictly speaking accurate and never has been completely true in lived reality.

According to a traditional ethic of medicine, part of what makes medicine a profession is that doctors sign up for a greater level of service and self-effacing care to some people, namely our patients.  Taking care of my patients is my particular job.  If I consider someone my patient, that means something about what I owe them in terms of time, attention, and care.  I will stay late for my patient; I don’t have special obligations to all of the patients who show up at my institution or who live in my community; I have special obligations to my patients.

more…

Where to Publish and Not to Publish in Bioethics

5 May, 16 | by bearp

Guest Post by Stefan Eriksson & Gert Helgesson, Uppsala University

* Note: this is a cross-posting from The Ethics Blog, hosted by the Centre for Research Ethics & Bioethics (CRB) at Uppsala University. The link to the original article is here. Re-posted with permission of the authors.

Introduction

Allegedly, there are over 8,000 so-called predatory journals out there. Instead of supporting readers and science, these journals serve their own economic interests first and at best offer dubious merits for scholars. We believe that scholars working in any academic discipline have a professional interest and a responsibility to keep track of these journals. It is our job to warn the young or inexperienced of journals where a publication or editorship could be detrimental to their career. Even with the best of intent, researchers who publish in these journals inadvertently subject themselves to criticism. We have seen “predatory” publishing take off in a big way and noticed how colleagues start to turn up in the pages of some of these journals. This trend, referred to by some as the dark side of publishing, needs to be reversed.

more…

Patient Views about Consent, Confidentiality & Information-Sharing in Genetic Medicine.

29 Apr, 16 | by BMJ

Guest post by Sandi Dheensa, Angela Fenwick and Anneke Lucassen

Imagine you’re a clinician in genetic medicine.  For a while, you’ve been seeing Joe Bloggs, a patient with a mutation in a gene that’s caused a hereditary form of colon cancer.  As is your standard practice, you help Joe identify who in his family is also at risk and spend some time talking about how he’ll tell them.  The Bloggs’ are a large bunch: Joe has children, siblings, nieces, nephews, aunts, uncles, and cousins, all of whom might have the mutation.  Anyone who tests positive would be eligible for regular bowel screening, which – while not pleasant – makes it much more likely that any cancer will be caught at a  treatable stage.  Unfortunately, despite all this, you’ve reason to believe that Joe hasn’t told his relatives anything and now you’re unsure what to do.

What are your options?  You might say Joe’s confidentiality and autonomy are paramount: it’s up to him what he does, and, as his doctor, you’ve done your part by telling him the cancer is heritable.  Or you might argue that Joe’s family needs to know – but how  and when?  The GMC says you can share a patient’s personal information without consent if the benefit of doing so outweighs the risk: does the situation meet this criterion?  What if you share the information and Joe sues you for breaching his confidentiality?  But what if you don’t say anything and a relative develops a cancer that could’ve been prevented?  Won’t their trust in the health service be shaken if they knew you’d chosen not to share?  Indeed, the UK and Netherlands have recently seen cases where relatives  questioned the health service’s non-disclosure of relevant information.

Taking a “joint account” view of confidentiality from the outset would’ve avoided these situations.  The joint account involves viewing genetic and personal information as distinct: the possible inheritance of cancer is common to the whole Bloggs family, but that Joe has stage III bowel cancer is personal.  If genetic information is confidential to the family, not just the tested patient, you’d have told Joe upfront, before even drawing his blood, that you’d look into sensitive and appropriate ways to let his relatives know the information if they might benefit from it.  Later down the line, when it materialised he hadn’t told his family, it would’ve been easier to negotiate what to do.

In our recent JME paper, we explored the views of people affected by hereditary cancer and other conditions regarding the distinction between genetic and personal information, the levels of confidentiality afforded respectively, and healthcare professionals’ roles and responsibilities toward their patients’ relatives.

In line with the joint account approach, our interviewees considered their signs, symptoms, and diagnoses as personal, but thought genetic risk was familial and that their relatives needed to know about it. more…

Recent Attempts to Restrict the Abortion Law in Poland: A Commentary

25 Apr, 16 | by BMJ

Guest post by Dr Atina Krajewska, University of Sheffield

A couple of weeks ago news hit the headlines about attempts to introduce a total ban on abortion in Poland.  The legislative proposal that caused outrange among women’s rights organisations has been drafted by a citizen’s initiative, “Stop Abortion”, and is the fourth attempt to restrict abortion access to have been given a parliamentary hearing in Poland in the last 5 years.  The proposal must be supported by 100 000 signatures before it can be voted in Parliament.  However, as this threshold has been easily met in the past, it is worth reflecting on its causes and possible legal and social consequences for Poland and Europe.

Current law

Poland is well known for its conservative approach towards reproductive rights.  The current Act on Family Planning, from 1993, extends the protection of the right to life to the prenatal phase of human life.  It allows doctors to perform lawful abortions in only three sets of circumstances: when a) the pregnancy constitutes a danger to the life or health of the mother; b) prenatal tests suggest a high risk of a serious and irreversible abnormality or a severe life-threatening illness of the foetus; c) there is a justified suspicion that the pregnancy is a result of a criminal act (rape or incest).  A lawful termination can take only place within the first 12 weeks of pregnancy.  The Act has been often criticised as one of the most restrictive in Europe.

Nevertheless, despite popular belief, it is not the current law that seems to lie at the root of the problem.  The reason for the limited access to abortion services for women is not the restrictive legislation, but its highly limiting and narrow interpretation and incorrect implementation.  Poland has recently lost three major cases before the European Court of Human Rights (Tysiac, R.R., and P & S) due to the lack of adequate procedures guaranteeing the full exercise of statutory rights and medical practice substantially limiting access to lawful abortions.  For the first time in the abortion context, the Court found that the actions of Polish authorities and medical professionals have met the threshold of inhumane and degrading treatment, set in Article 3 of the European Convention on Human Rights. Poland is the best example of how social, historic and political circumstances led to the bifurcation of different forms of legality, i.e. to discrepancies between formal and informal rules, between law and other – ethical and social – norms.

The new proposal

The new bill “on the general protection of human life and preparation for family life” defines “prenatal life” as starting from the moment of conception, which is described as “the fusion of the female and male gametes”.  The same definition applies to the term “conceived child”, used in the Polish criminal code.

Crucially, the Bill proposes to delete all three conditions under which lawful abortion is currently permitted.  This, of course, constitutes a dramatic departure from the current legal framework, and converts the current legislation into an administrative tool setting general directions for (limited) sexual education and social care necessary for families affected by the new regulation.  At the same time, and more importantly, the new proposal sets out changes to the Polish criminal code, according to which ‘the causation of the death of a conceived child’ would carry a sentence between 3 months and 5 years of imprisonment.  The same sanction would apply if someone were to assist with, or incite, abortion.

There is only one exception. more…

Oooops

25 Apr, 16 | by Iain Brassington

I inserted the wrong link into Udo’s guest post the other day.  It should have been this.  It’s corrected now, though.

*ahem*

Circumcision and Sexual Function: Bad Science Reporting Misleads Parents

22 Apr, 16 | by bearp

by Brian D. Earp / (@briandavidearp)

Introduction

Another day, another round of uncritical media coverage of an empirical study about circumcision and sexual function. That’s including from the New York Times, whose Nicholas Bakalar has more or less recycled the content of a university press release without incorporating any skeptical analysis from other scientists. That’s par for the course for Bakalar.[1]

The new study is by Jennifer Bossio and her colleagues from Queen’s University in Ontario, Canada: it looked at penile sensitivity at various locations on the penis, comparing a sample of men who had been circumcised when they were infants (meaning they had their foreskins surgically removed), with a sample of men who remained genitally intact (meaning they kept their foreskins into adulthood).[2]

What did the researchers discover? According to a typical headline from the past few days:

Circumcision does not reduce penis sensitivity.”

But that’s not what the study showed. Before we get into the details of the science, and looking just at this claim from the “headline” conclusion, it might be helpful to review some basic anatomy.

more…

No to Conscientious Objection Accommodation in Health Care

22 Apr, 16 | by BMJ

Guest post by Udo Schuklenk

Canada is currently in the midst of a national debate about the scope of assisted dying regulations and policies.  It’s a result of a 2015 Supreme Court ruling that declared parts of the country’s Criminal Code null and void that criminalises assisted dying.  As you would expect, there is a lot of forth and back happening between proponents of a permissive regime (à la Belgium/ Netherlands), and those who would like a restrictive regime.  Another issue is being debated as well as litigated in the courts, the seemingly intractable question of conscientious objection accommodation.

In preparation for incoming provincial policies on assisted dying, the provinces’ statutory medical bodies, such as for instance the College of Physicians and Surgeons of Ontario, have stipulated that while doctors are not obliged to provide directly assistance in dying to eligible patients, they must transfer patents on to a colleague who they know will provide that service.  A similar stance has been taken in the recommendations issued by an expert advisory group appointed by the country’s provinces and territories, who are ultimately responsible for health care.  The same holds true for a report issued by a special joint parliamentary committee of the country’s national parliament.  Unsurprisingly, religious doctors’ groups, but not only religious doctors’ groups, are all fired up about this and have taken, for instance, the Ontario College to court to stop this policy from being implemented.  Their argument is that conscientious objectors among its members must not be forced to provide even this level of assistance if their conscience dictates otherwise.

It is likely that the compromise reached will entail an obligation on health care professionals to transfer patients on to a willing health care professional.  That will not satisfy the objectors, because if you really hold the view that assisting a competent patient who meets the criteria stipulated by the Supreme Court is tantamount to murder, this compromise would simply translate into you passing on your patient to someone who you know would ‘murder’ that patient.  It is also not satisfactory from the patient’s perspective, because they could – depending on where they live – be forced to travel great distances in order to meet the obliging health care professional.  That could well prevent some patients from access to an assisted death.

The question arises why we should accommodate conscientiously objecting health care professionals in the first place.  It is somewhat taken as a given in much of the medical ethics literature that conscientious objectors are deserving of some kind of accommodation.  Arguments often focus on what makes a conscientious objection deserving of accommodation, and on what reasonable limits should be imposed on conscientious objectors, as opposed to the question of whether conscientious objectors deserve accommodation at all.

In our paper we develop a more radical argument for the view that health care professionals have no moral claim to conscientious objection accommodation in liberal democracies.  We put forward a number of arguments to support that conclusion.  For starters, it is impossible to evaluate the truth of the authoritative documents that motivate particular consciences.  The courts in many jurisdictions that have had to deal with conscience related cases have conceded that much.  It turns out that we also actually cannot test whether someone’s conscience claims are actually true, in the sense that that person actually has those convictions.  It might just be a convenient cop-out, and yet we readily accommodate objectors at great inconvenience to patients and significant cost to health care systems.

Why should we accommodate privately held convictions that objecting professionals would like to prioritise over their professional obligations to patients?   That demand seems unprofessional in its own right.  The promise to serve the public good and the individual patient first goes right out of the window, there and then.  These professionals joined their profession voluntarily and they knew that the scope of professional practice and their obligations to patients wouldn’t be defined by them personally, and also that changes to scope would invariably occur over time.  The content of conscientious objections is by necessity arbitrary and encompasses any number of practical refusals to provide services.  No health care system should permit its monopoly service providers that sort of freedom when it comes to the delivery of the very same services that they voluntarily contracted to deliver.  Permitting such conscience accommodations ultimately subverts the very reasons for why society has professions in the first place.

 

Udo Schuklenk tweets @schuklenk

Read the full paper here.

How We Feel about Human Cloning

7 Apr, 16 | by BMJ

Guest post by Joshua May

Suppose you desperately want a healthy child to build a family of your own.  As is increasingly common, however, you can’t do it naturally – whether from infertility, a genetic disease you don’t want to pass on, or a non-traditional relationship.  If you seek a genetic connection with the child, there are some limitations to the main alternatives: adoption, surrogacy, and in vitro fertilization.  You may yearn for more options.

How would you feel about cloning?  Take the nucleus of a cell from yourself or a loved one, then put it into an egg that will eventually develop into a baby that shares nearly all the genes of the donor cell.  The resulting baby will simply be a kind of ‘delayed twin’ of the donor.

Most people believe this is immoral.  There’s a bit more support for therapeutic uses that merely create new tissue, for example.  But, at least in the US and UK, people overwhelmingly condemn cloning for the purposes of creating new human lives.  In fact, a recent poll suggests there is little disagreement in America over this issue, where human cloning is among the most widely condemned topics (alongside polygamy and infidelity).

That’s what people think, but how do they feel?  Controversial bioethical issues often generate intense feelings.  Some bioethicists treat cloning in particular as a line in the sand that we mustn’t cross, for fear of sliding down a slippery slope to a dystopia.

Consider Leon Kass, who played a major role in public policy as chair of George W. Bush’s President’s Council on Bioethics.  Kass argues that there is wisdom in repugnance toward human cloning, allowing us to ‘intuit and feel, immediately and without argument, the violation of things that we rightfully hold dear’.  As opposed to mere unease or sadness, Kass and some others have argued that disgust is such a powerful and distinctive emotion that we should take it seriously as a moral guide when deliberating about ethical issues.

An empirical claim lurks.  Such bioethicists assume that people in general share their reaction of repugnance. Besides, if we can uncover the emotional reactions people tend to feel toward disputed moral issues, then we can better understand why they hold the beliefs they do.  Does the prospect of cloning humans make us sick?  Scared?  Sad?  Angry?  Excited?  At ease?

In my paper, I provide some initial evidence that people (at least in the States) feel primarily anxious and curious about human reproductive cloning.  These were the most frequently self-reported negative and positive emotions, not disgust, fear, sadness, anger, excitement, amusement, comfort, or joy. more…

Posted without Comment…

6 Apr, 16 | by Iain Brassington

… except to say that (a) if I could have my time again, I’d retrain as a medic and go to work in one of the developed world’s most dysfunctional healthcare systems:

bi_graphics-overall-physician-pay

(click for bigger)

and (b) I’d be grateful that I’m not a woman:

bi_graphics-male-and-female-doctors-pay-gap

(click for bigger)

(Sourcesourciersourciest.)

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