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JME

Rescuing the Duty to Rescue

1 May, 14 | by BMJ

Guest post by Tina Rulli and Joseph Millum

It is commonly thought that individuals have a moral duty to rescue others in peril. Bioethicists have leveraged this duty to rescue for a variety of purposes—including to criticize the use of placebo controls in trials in developing countries; to defend duties of researchers to return urgent incidental findings and provide ancillary care; to argue for a duty to become an organ donor; to defend allocating resources to develop drugs for rare diseases and to fund costly end of life care.

Despite their widespread use, there are serious problems with the two most cited duties to rescue: the individual duty of easy rescue and the institutional rule of rescue. The latter—the psychological tendency to support allocation of large amounts of money to rescuing identifiable victims at the opportunity cost of helping anonymous others—is indefensible.  (See Peter Singer’s opinion piece in the Washington Post criticizing donations to Make-a-Wish). The former can be defended, but has its own problems. One concerns its force: does it really apply only to very low-cost rescues? Consideration of physicians’ duties to warn suggests otherwise. Another problem concerns its scope: whom do I have to rescue? If it applies to everyone who needs rescue, even low-cost rescues may place enormous demands on individuals (cf Peter Singer’s famous essay: “Famine, Affluence, and Morality”).

We identify two further conceptions of the duty to rescue that have received less attention. An institutional duty of easy rescue would justify spending institutional dollars on rescue cases that are not too costly, while leaving room for institutions to fulfill lesser, but still important needs of others. A professional duty to rescue recognizes the more demanding duties certain medical professionals have. Both provide traction in answering some outstanding rescue dilemmas. We conclude our paper by proposing research priorities for bioethicists to help researchers and doctors sort through the obligations they have to people in need of medical rescue.

Read the full paper in the JME here.

Multiplex Parenting: in vitro Gametogenesis and the Generations to Come

24 Mar, 14 | by BMJ

Guest Post by César Palacios-González, John Harris and Giuseppe Testa; for the full paper, click here.

Recent biotechnology breakthroughs suggest that functional human gametes could soon be created in vitro.  While the ethical debate on the uses of in vitro generated gametes (IVG) was originally constrained by the fact that they could be derived only from embryonic stem cell lines, the advent of induced Pluripotent Stem Cells (hiPSC) creates the possibility that somatic cells may be used to generate gametes.  This means that in the future it might be possible to generate human sperm and oocytes from male cells, and oocytes from female cells.  (So far it has not been possible to derive sperm from female cells.)

Among the different applications that have been explored in the academic literature, like the creation of embryos for genetic research and what has been called “in vitro eugenics”, we think that the most dramatic application of IVG will be in the field of human reproduction.  In a recent article in the Journal of Medical Ethics, Robert Sparrow rightly notices that IVG could allow post-puberty males who are unable to produce viable sperm, women who have undergone premature menopause, and those who have lost their gonads due to injury or had them removed in the course of cancer treatment to have genetically related kin.  To this list we add (and explore in our paper) a fourth use that has been overlooked until now: that IVG would allow the reparation of some of the harms done to people by means of biological involuntary sterilization. more…

The Definition of Mental Disorder: Evolving but Dysfunctional?

12 Feb, 14 | by Iain Brassington

Guest post by Rachel Bingham

In 1973 the American Psychiatric Association removed homosexuality from the official classification of ‘mental disorders’.  This was the result of a successful public campaign and changing political views.  Yet, if homosexuality could be (wrongly) diagnosed as a mental disorder – using an official classification – what does this say about the other states that remain in the classification?  How can we be sure that other states are not being labeled as mental disorders solely due to discrimination and stigma?

One way to respond to these concerns is to offer a definition of mental disorder, aiming to capture all and only genuine mental illness.  Unfortunately, this has proved exceptionally difficult to do.  Definitions that rely only on ‘facts’ – information about the brain, the genes, and so on – do not tell us whether or not a condition is really an illness.  They simply tell us about the underlying biology once we already recognize an illness to be present.  For example, finding differences in the brains of people who are criminals or of people who have recently fallen in love would not prove these states to be “illnesses”; it would only show that different states of being are reflected differently in the brain.  It is widely acknowledged that defining mental disorder requires some sort of value judgment – that is, recognition that the state in question is undesirable or harmful.  But once we bring value judgments into play concerns about social discrimination are amplified.  Might other states be wrongfully diagnosed solely because of social or political dimensions that have not yet been recognized for what they are?  If value judgments are permitted to define disorder, do we risk repeating a history of wrongful psychiatric diagnosis?  These questions are explored at greater length in the full paper in the JME, available here.

An Attack of the What-Ifs

25 Oct, 13 | by Iain Brassington

Among the comments to the last post, there’s this from Parmenion59:

So…if a cure for lung cancer is found, and the study has been funded through money from a tobacco company…the BMJ won’t publish said study?
Way to go BMJ.

Hmmm.  At least on the face of it, this looks like an important point – one that deserves a bit of unpacking.  We can begin by distinguishing between responses to this particular point, and responses to the general idea behind it.  First things first.

I’m willing to bite the bullet and admit without worrying too much that the policy of not accepting papers funded by the tobacco industry may mean that some research is not publicised.  There’s a small handful of reasons why I’m willing to do that.  One of them – admittedly the weakest of the lot – is based on the idea that it’s not wholly clear that much tobacco money really is directed at finding a cure for lung cancer, rather than firefighting other research about the detrimental properties of tobacco.  But that, as I say, is weak, based on suspicion rather than anything enormously substantial; and even if the hunch is correct, it’s merely empirical rather than anything conceptual.  Still, even if the hunch is wrong, it shouldn’t matter, because there’re stronger reasons.

One is based around the idea that there’s a special providence in the fall of a pipette – or, put another way, you can’t keep a good truth down.  If something is there to be discovered and is worth the effort, then it’ll be discovered sooner or later; if not by Smith, then by Jones.  And, because scientific progress is invariably a matter of the accretion of the work of several teams, all working independently and making minor discoveries, rather than one heroic person who would be solely responsible for The Cure For Cancer ™, the loss of one paper here and there probably won’t make all that much of a difference in the grand scheme of things. If that’s correct, then the idea that we might lose the cure for cancer is not all that compelling – not one about which we should worry too much.

A final reason is that, as I’ve said before elsewhere, I’m not persuaded that research is obligatory: it’s admirable, but not required by duty.  There’s a range of second-order arguments one might present here, but most relevant has to do with the benefits that research might generate.   more…

Biases in Clinical Ethics Consultation

19 Sep, 13 | by Iain Brassington

Guest post by Morten Magelssen, Reidar Pedersen, and Reidun Førde

Read the full paper here.

A difficult case involving a patient in an intensive care unit is brought to a clinical ethics consultant.  The ethics consultant argues that intensive care is futile and should be withdrawn.  The clinicians are grateful for the advice, and, with the assent of the patient’s relatives, decide to withdraw intensive care accordingly.

Clinical ethics consultation – by committees or individual consultants – involves reflection upon ethically and medically challenging cases.  When reflection is carried out in a systematic manner, then ideally the ethically salient points are brought out and discussed in a comprehensive and unbiased way.

But what if the consultation itself introduces new biases and implicit value judgments?  We won’t take a stand on how often this in fact happens, but rather draw attention to how easily it may occur and the dangers involved.  In our JME article we identify six sources of bias – or conflicts of interest – in clinical ethics consultation. For instance, in the case above, the ethics consultant could be biased towards the interests of health-care professions, or towards the hospital’s interests in keeping costs down and maintaining an unblemished public image.  In general, we argue, the potential for harmful biases is greater when the consultation is performed by an individual consultant rather than by a committee.

The introduction of new, harmful biases through ethics consultation, a process intended to reduce biases, would be problematic (and somewhat ironic).  Especially considering that, in the eyes of clinicians, the conclusion and advice of ethics consultation may appear to bear a stamp of ”ethically approved”.

We are fundamentally optimistic about the positive role clinical ethics consultation can play in aiding clinicians in the management of ethically complex cases.  However, ensuring the quality of clinical ethics case deliberations is vital.  Although biases can never be completely eradicated, the identification of potentially significant biases is an important part of quality improvement.

Safety First? How the Current Drug Approval System Lets Some Patients Down

15 Aug, 13 | by BMJ

Post by Julian Savulescu

Cross-posted from the Practical Ethics blog, and relating to this paper in the JME.

Andrew Culliford, whose story is featured in the Daily Mail, is one of the estimated 7 in 100,000 people living with Motor Neuron disease, a progressive degenerative disease which attacks muscles, leaving those affected eventually unable even to breathe unassisted. For Andrew, a young father who has a severe form of the disease, it means a two to five year life expectancy.

Like Les Halpin and Jenn McNary, the mother of twins afflicted with a similar rare disease, he has a simple request: earlier access to medicines that might help improve or extend his life.

The US introduced a mandatory pre-approval process for pharmaceutical drugs after over 100 people were killed by an untested drug formulation. Today, each drug must go through a series of strictly controlled trials, including Phase 1 tests on healthy volunteers, followed by Phases 2 and 3 which test the drug and dosages on smaller and then larger patient groups. The process is estimated to cost $500 million per drug and to take 8 – 12 years.

The process is designed to ensure the efficacy of drugs has been scientifically demonstrated to a very degree of confidence, and to ensure that patient safety is sufficiently protected. In many ways it has been a triumph of science and regulation.

But it has been a failure for one small group of patients: those with rare, imminently lethal diseases, for whom there are no existing good treatments. more…

The Value of Role Reversal

20 Jun, 13 | by BMJ

Guest Post by Rebecca Dresser, Washington University in St. Louis

Not so long ago, medical researchers had a habit of using themselves as guinea pigs.  Many scientists saw self-experimentation as the most ethical way to try out their ideas.  By going first, researchers could test their hypotheses and see how novel interventions affected human beings.

Today we rely on a more systematic process to decide when to begin human testing, with experts and ethicists evaluating when a trial is justified.  But a modified version of self-experimentation still makes sense.

People who conduct human research, as well as those serving on research ethics boards, can learn a lot from volunteering for studies.  Just as doctors learn from personal experience as patients, scientists and ethicists learn from personal experience as subjects.

Looking at study requirements and the consent process from the subject’s point of view can be quite educational.  I discovered this myself when I was given the option of enrolling in a cancer treatment trial.  I had never before realized that enrolling in a trial can delay the start of treatment, because of the extra appointments and procedures research enrollment can require.  Nor had I realized that because cancer trials take years to finish, subjects in those trials may lose an opportunity to receive new drugs that emerge during that time.  I’ve spent three decades writing about research ethics and serving on research review boards, but I learned new things once I had to decide whether to become a subject myself.

No one should be forced to participate in research, of course.  But I encourage research professionals to consider becoming subjects themselves (not necessarily in their own trials, but in studies conducted by others).  This modern version of self-experimentation might give researchers and ethicists a better sense of what people need to know before enrolling in a study.  It might also give scientists and review committees a deeper understanding of the risks, inconveniences, and benefits that subjects experience in research.

Rebecca’s paper “Personal Knowledge and Study Participation” is now available online first here.

JME Special Edition on Infanticide and “After-Birth Abortion”

2 May, 13 | by Iain Brassington

It’s going to be a little while before regular blogging resumes here – I’m aiming to get back up to speed in the next 10 days or so – but, in the meantime, the special edition of the JME devoted to The Paper Of Which We Do Not Speak is now out and available here.  Some of the papers are open access; others aren’t.

For better or worse, part of being unable to do much blogging at the moment is that I’m not going to be around much to mod any comments that come in – as I’m sure they will – over the next few days.  Don’t go thinking you’re being blocked: it’s much more likely that I’m marking essays.

A bit more on Circumcision

28 Mar, 13 | by Iain Brassington

Maybe he should have been invited to contribute to the special edition: Somegreybloke seems to have the debate wrapped up perfectly…

Are Biomedical Ethics Journals Institutionally Racist?

25 Mar, 13 | by Iain Brassington

So there’s this letter published in the Journal of Bioethical Inquiry that moots the idea that the top biomedical ethics journals might be institutionally racist.  In it, Subrata Chattopadhyay, Catherine Myser and Raymond De Vries point out that the editorial boards of a good number of journals are dominated by members who are located in the global North – countries officially listed as being high or very high on the development index, with only 1.3% drawn from countries classed as least developed.

Developing World Bioethics has the highest proportion of its editorial board located in the least-developed nations; but even there, the figure is only just over 11%.  On the face of it, this doesn’t look too good, especially given the proportion of the world’s population in general that lives in the poorest countries.  The JME, by comparison, draws 100% of its editorial board members from people located in highly and very-highly developed nations.

Still: this isn’t likely to be the whole story.  Udo Schucklenk – a founding editor of DWB, of course – takes issue with the letter on a number of grounds.  For one thing, he he suggests that Chattopadhyay et al might be performing a sleight of hand with their metrics; by lumping together countries ranked as high and very high on the development index, they’re lumping together the UK, Germany, and the US with Iran, Malaysia, and Jamaica.  Neither Iran nor Jamaica is a classic basket-case economy; but, still, “high” and “very high” development covers a vast range of income levels.  Treating all these countries in the same way obscures that there’s a huge range of locations from which editorial staff may be drawn.

I’ll come back to this in a moment. more…

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