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Brian Earp’s Posts

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

15 Aug, 17 | by bearp

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media. This fact alone will make things rather complicated for the prosecution.

The defense team has already signaled that it will emphasize the “low-risk” aspect of the alleged cutting, claiming that it shouldn’t really count as mutilation. It is, after all, far less invasive than Jewish ritual male circumcision, which is legally allowed on minors in the US, no questions asked.

Based on this discrepancy, if attorneys for the Bohra can show a gendered or religious double standard in existing law, the ramifications will be not be small. Either male circumcision will have to be restricted in some way, or “minor” forms of FGM permitted. The outcome either way will be explosive.

I will dig into the male-female comparison—and explore its legal implications—later on. But the law will not actually be my main focus. Instead, what I’ll suggest in this piece is that the question of health consequences, whether positive or negative, should not exhaust the ethical analysis of these procedures.

There is more to “good” and “bad” than healthy versus unhealthy.

In fact, as the Bohra case will show, there are serious, even dangerous downsides to medicalizing moral reasoning – and to moralizing medical research. On both counts, I argue, at least when it comes to childhood genital cutting, apparently biased policies from the WHO are making things a great deal worse.

* * *

“The tendency today is to roll over and ‘scientify’ everything,” says Julian Savulescu, a philosopher at the University of Oxford. He goes on: “Evidence will tell us what to do, people believe.” But people are getting it wrong. When you reduce your ethical analysis to benefit-risk ratios, you miss important questions of value.

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Pain After Cancer: A New Model for Pain Psychology?

27 Jul, 17 | by bearp

Guest Post by Lauren Heathcote

What if every headache, every slight twinge in your back, was potentially life threatening? What if you couldn’t tell a brain tumour from coffee-withdrawal? These can be constant, niggling worries for many people who have survived cancer, and we think their experiences can tell us something important about pain.

If you have read a Body in Mind blog post over the last few years you will likely have come across the idea that pain is all about meaning. Pain is about perceiving threat and danger to the body. The general idea is that the brain uses different types of information – including from the external and internal world through our senses, and from within brain centres that encode things like emotion and memory – to decide how much danger the body is in. The brain then produces an output based on all this information, the feeling of pain, to reflect that danger. Importantly, how we interpret painful sensations is an integral part of assigning meaning and making sense of those experiences.

So if pain is about threat – if it’s about meaning – an ideal model to study pain would be one where there is little tissue damage but a high level of perceived danger. Scientists have played around with this idea in the lab for a few decades now (like this cool study in adults and this ace study in kids). The trouble is; thanks to our cushty[1] modern ethics system, making lab participants feel like they are in extreme, life-threatening danger is understandably a bit of a no-go.

So what about outside the lab? A little while ago I became interested in the experience of pain following cancer treatment. Pain is not only a common experience during and after cancer treatment, but it is also one of the most common symptoms that leads to an initial cancer diagnosis. Many individuals live with pain for months before receiving a cancer diagnosis, making pain an experience that was ignored for so long but indicative of such grave danger.  It’s hardly surprising, then, that the experience of pain after cancer can be an anxiety-inducing event. Imagine you are given the ‘all clear’ and you are told to go out and live your life despite the near-constant fear that the cancer may return. How do you live within your body from that moment on? How do you judge a true from a false alarm?

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Can We Trust Research in Science and Medicine?

26 Jul, 17 | by bearp

By Brian D. Earp  (@briandavidearp)

Readers of the JME Blog might be interested in this series of short videos in which I discuss some of the major ongoing problems with research ethics and publication integrity in science and medicine. How much of the published literature is trustworthy? Why is peer review such a poor quality control mechanism? How can we judge whether someone is really an expert in a scientific area? What happens when empirical research gets polarized? Most of these are short – just a few minutes. Links below:

Why most published research probably is false

The politicization of science and the problem of expertise

Science’s publication bias problem – why negative results are important

Getting beyond accusations of being either “pro-science” or “anti-science”

Are we all scientific experts now? When to be skeptical about scientific claims, and when to defer to experts

Predatory open access publishers and why peer review is broken

The future of scientific peer review

Sloppy science going on at the CDC and WHO

Dogmas in science – how do they form?

Please note: this post will be cross-published with the Practical Ethics blog. 

Re: Nudges in a Post-truth World 

19 Jul, 17 | by bearp

Guest Post: Nathan Hodson 

In a recent article in the Journal of Medical Ethics, Neil Levy has developed a concept of “nudges to reason,” offering a new tool for those trying to reconcile medical ethics with the application of behavioural psychological research – a practice known as nudging. Very roughly, nudging means adjusting the way choices are presented to the public in order to promote certain decisions.

As Levy notes, some people are concerned that nudges present a threat to autonomy. Attempts at reconciling nudges with ethics, then, are important because nudging in healthcare is here to stay but we need to ensure it is used in ways that respect autonomy (and other moral principles).

The term “nudge” is perhaps a misnomer. To fill out the concept a bit, it commonly denotes the use of behavioural economics and behavioural psychology to the construction of choice architecture through carefully designed trials. But every choice we face, in any context, already comes with a choice architecture: there are endless contextual factors that impact the decisions we make.

When we ask whether nudging is acceptable we are asking whether an arbitrary or random choice architecture is more acceptable than a deliberate choice architecture, or whether an uninformed choice architecture is better than one informed by research.

In fact the permissibility of a nudge derives from whether it is being used in an ethically acceptable way, something that can only be explored on an individual basis. Thaler and Sunstein locate ethical acceptability in promoting the health of the person being nudged (and call this Libertarian Paternalism — i.e. sensible choices are promoted but no option is foreclosed). An alternative approach was proposed by Mitchell: nudges are justified if they maximise future liberty. Either way the nudging itself is not inherently problematic.

Detailing the relevant psychological research, Levy outlines how our responses to new information are influenced by our understanding of the source. Does the source stand to benefit from persuading us? Does the source wish us good or ill? These are classified as Messenger factors in the Behavioural Insights Team’s1 MINDSPACE classification.

Levy goes on to show how sensitivity to these factors makes evolutionary sense and as such constitutes part of our subconscious reasoning. Nudges that promote appropriate sensitivity to the factors, then, do not subvert our rationality; they apply or appeal directly to it.

There is huge scope within Levy’s grouping of nudges for interventions that do not threaten autonomy. For example the “N” in MINDSPACE stands for “norms.” An attuned sensitivity to group norms is adaptive in the same way as are messenger factors. But there is another group of nudges that actively promote autonomy.

The challenges to healthcare and wider society in this purportedly post-truth era demand improved quality of public debate and individual deliberation, and nudges can help. Building on Mitchell’s notion that nudges can be good if they increase future liberty and taking a rich conception of autonomy maximised through reflection and rationality, we could conceive of nudge-based policies which maximise current autonomy.  more…

Not Just About Consent: The Ethical Dimensions of Research Methodology Knowledge in IRBs

15 Jun, 17 | by bearp

Guest Post: Sarah Wieten

The recent article, “Some Social Scientists Are Tired of Asking for Permission” in the New York Times inspired a great deal of debate about the role of institutional research ethics board (IRB) oversight in social science, which some argue is in most cases unlikely to involve significant harm to participants.

While the role IRBs play in sociological research is being re-examined, the importance of IRB oversight for medical research was not similarly called into question. But what exactly does IRB oversight in medical research involve? Should these groups be content with assuring that patients and participants in medical research have provided informed consent? Or do they have wider duties? What is the relationship between methodologically rigorous science and ethical science?

The approval of research projects by IRBs is an integral part of the conduct of research in universities. IRBs ensure that all research follows key ethical guidelines and is pursued for good reason, and in doing so, they aim to keep patients and participants out of harm’s way. IRBs are important gatekeepers of institutional research, and serve as a check on the work of scientists, physicians, and others who are pursuing new knowledge.

We would assume then, that people serving on IRBs have a clear understanding of relevant research design. That way, they can check the research for ethical issues stemming from the methodology. They can also make sure that methodologically poor studies do not proceed, as this would be an unethical waste of resources (and would put participants at risk without a reasonable prospect of gaining reliable knowledge in exchange).

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How Different are Female, Male and Intersex Genital Cutting?

16 May, 17 | by bearp

By Brian D. Earp  (@briandavidearp), with Rebecca Steinfeld, Goldsmiths, University of London 

Three members of the Dawoodi Bohra sect of Islam were recently indicted on charges of “female genital mutilation” (FGM) in the US state of Michigan. In Norway, meanwhile, one of the major political parties has backed a measure to ban childhood male circumcision.

Fearing that objections to female forms of genital cutting will be applied to male forms, some commentators have rushed to draw a “clear distinction” between them. Others, however, have highlighted the similarities.

In fact, childhood genital cutting is usually divided not just into two, but three separate categories: “FGM” for females; “circumcision” for males; and “genital normalisation” surgery for intersex children – those born with ambiguous genitals or mixed sex characteristics.

In Western countries, popular attitudes towards these procedures differ sharply depending on the child’s sex. In females, any medically unnecessary genital cutting, no matter how minor or sterilised, is seen as an intolerable violation of her bodily integrity and human rights. Most Westerners believe that such cutting must be legally prohibited.

In intersex children, while it is still common for doctors to surgically modify their genitals without a strict medical justification, there is growing opposition to non-essential “cosmetic” surgeries, designed to mould ambiguous genitalia into a “binary” male or female appearance.

Belgian model Hanne Gaby Odiele, for example, has spoken openly about the negative impact of the “irreversible, unconsented and unnecessary” intersex surgeries she was subjected to growing up.

In male children, by contrast, the dominant view is that boys are not significantly harmed by being circumcised, despite the loss of sensitive tissue. Some even point to potential health benefits, although most doctors agree that these benefits are not enough to outweigh the risks and harms. Even so, many people believe that parents should be allowed to choose circumcision for their sons, whether for cultural or religious reasons.

But these attitudes are starting to change. Over the past few decades, and even more strongly in recent years, scholars of genital cutting have argued that there is too much overlap in the physical effects, motivations, and symbolic meanings of these three practices – when their full range across societies is considered – for categorical distinctions based on sex or gender to hold up.

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Treatment of Premature Ejaculation: Alleviating Sexual Dysfunction, Disease Mongering, or Both?

25 Mar, 17 | by bearp

by Brian D. Earp / (@briandavidearp)

An interesting new paper, “Distress, Disease, Desire: Perspectives on the Medicalization of Premature Ejaculation,” has just been published online at the Journal of Medical Ethics. According to the authors, Ylva Söderfeldt, Adam Droppe, and Tim Ohnhäuser, their aim is to “question the very concept of premature ejaculation and ask whether it in itself reproduces the same sexual norms that cause some to experience distress over ‘too quick’ ejaculations.” To prime the reader for their project, they begin with a familiar story:

a condition previously thought of as a variant within the normal range, as a personal shortcoming, or as a psychological issue is at a certain point cast as a medical problem. Diagnostic criteria and guidelines are (re-)formulated in ways that invent or widen the patient group and thus create or boost the market for the new drug. Those involved in developing the criteria and the treatment are sometimes the same persons and, furthermore, cultivate close connections to the pharmaceutical companies profiting from the development. Sufferers experience relief from personal guilt when they learn that their problem is a medical and treatable one, whereas critics call out the process as disease-mongering.

Something like this pattern has indeed played out time and time again – methylphenidate (Ritalin) for ADHD, sildenafil for erectile dysfunction, and more recently the development of flibanserin for “hypoactive sexual desire disorder” (see the excellent analysis by Antonie Meixel et al., “Hypoactive Sexual Desire Disorder: Inventing a Disease to Sell Low Libido” in a previous issue of JME). Having set up this narrative, Söderfeldt, Droppe, and Ohnhäuser turn their attention to the case at hand—the “medicalization” of premature ejaculation (PE).

The begin by noting that certain selective serotonin reuptake inhibitors (SSRIs), normally used to treat depression (itself the “medicalization of sadness” on some accounts), have been known since at least the 1990s to sometimes delay ejaculation as a “side-effect.” They then call attention to a 2004 application by Johnson & Johnson for FDA approval of dapoxetine for on-demand—as opposed to off-label—“treatment” of PE.

Rather than digging into debates over medical evidence concerning the efficacy of the drug, they jump right to a set normative questions touching on the medicalization of sexual experience and behavior. As they note, ethical discussions concerning the prescription of Ritalin and sildenafil (among other pharmaceutical innovations) centered on questions about what we see as “normal” behavior—and on how adding drugs to the mix might change those perceptions in ways that are potentially concerning.

But with few exceptions, according to Söderfeldt et al., the introduction of dapoxetine as a “treatment” for PE “has not yet elicited reactions of that sort.” They see this as surprising, because PE is to a large extent “a diagnosis that reflects cultural standards and is contingent on normative social behavior.”

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Conscientious Objection Accommodation in Healthcare – Clashing Perspectives

24 Mar, 17 | by bearp

by Brian D. Earp / (@briandavidearp)

On behalf of the Journal of Medical Ethics, I would like to draw your attention to the current issue, now available online, which is almost entirely dedicated to the vexing question of conscientious objection in healthcare. When, if ever, should a healthcare provider’s personal conviction about the wrongness of some intervention (be it abortion, euthanasia, or whatever) be accommodated?

In a paper that has already attracted much attention, Ricardo Smalling and Udo Schuklenk argue that medical professionals have no moral claim to conscientious objection accommodation in liberal democracies.

In part, they base their argument on their judgment that “the typical conscientious objector does not object to unreasonable, controversial professional services—involving torture, for instance—but to the provision of professional services that are both uncontroversially legal and that patients are entitled to receive” (emphasis added).

It seems clear that a lot hinges on what is meant by “unreasonable” there–and on who should get to decide what falls under that label. One answer to this question might be, “society should get to decide, through the enactment of laws, which ideally express the view of the majority of people as to what is reasonable or unreasonable in medical and other contexts.”

“Therefore,” this answer continues, “if a doctor thinks that some legally allowed service X is immoral, then she should rally her fellow citizens to lobby their representatives to change the relevant law; but she should not be excused from providing the service, if by law the patient is entitled to receive it.”

“And if she really doesn’t want to do X,” the answer concludes, “she can always leave the profession and take up some other line of work.”

This is a rough summary of what Smalling and Schuklenk do in fact say. I’d be curious to hear what people think. My hunch is that a person’s attitude toward the answer (i.e., whether they see it as good and convincing or not) will depend in large part on what they substitute for “X” in their minds when thinking about conscientious objection.

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How to Keep HIV Cure-Related Trials Ethical: The Benefit/Risk Ratio Challenge

20 Feb, 17 | by bearp

Guest Post by Nir Eyal

Re: Special Issue of the Journal of Medical Ethics on the ethics and challenges of an HIV cure

For most patients with HIV who have access to antiretroviral treatment and use it properly, that treatment works well. But the holy grail of HIV research remains finding a cure. Sometimes that means a literal, sterilizing cure that would remove HIV from the body. But increasingly the aim is to find a mere functional cure that would send HIV into sustained remission during which antiretrovirals would be unnecessary.

Early successes in cure-related research, most notably the apparent cure of ‘Berlin patient’ Timothy Brown, prompted the International AIDS Society and the US National Institutes of Health to declare cure-related research a high priority. Recent successes in animal models have re-kindled hopes, and cure-related research is ongoing.

But there is a catch. Many of the early-phase cure-related studies that are currently planned or under way carry risks that are either very high or hard to quantify. These risks come from toxicity (e.g., of stem cell transplantation in an immunocompromised population), necessary interruptions to antiretroviral treatment (either short ‘pauses’ or intentionally longer breaks), or invasive physical exams. They affect study subjects and, sometimes, third parties like sexual partners or foetuses.

While high or unknown risks are a mainstay of early-phase trials in areas like cancer research, cure study participants typically have a safe and efficacious alternative to those risks: remaining on antiretrovirals. Can we justify asking patients who are doing well on antiretrovirals to accept the risk and uncertainty of many HIV cure-related trials? If we cannot, we might need to give up on the hope of curing HIV, or of achieving controlled remission.

These ethical questions about HIV cure-related trials were first raised by an activist, then asked again and again. They also arise in human subject research beyond HIV cure-related studies: what should we do when it is hard to keep a socially-important study beneficial in prospect to study participants? Are we ever permitted to compromise the individual’s objective interests in the pursuit of collective goals? What are legitimate ways of pre-empting this dilemma? The entire February 2017 issue of Journal of Medical Ethics is dedicated to clarifying and trying to answer these questions.

After an introduction, the journal issue provides a background by leading HIV-cure related researchers Dan Kuritzkes and Kenneth Freedberg and Paul Sax, as well as myself, a philosopher. Articles by legally-trained bioethicists Rebecca Dresser and Seema Shah and philosopher Caspar Hare suggest ways to quantify and mitigate risks to participants of cure-related studies. Contributions by philosopher Lara Buchak, bioethicist and lawyer Emily Largent, and AIDS activist David Evans assess how much the potential benefits to study participants, ranging from the remote hope of being cured through financial incentives to the satisfaction of having helped others, can legitimately offset any remaining risks. Legally-trained bioethicist George Annas and philosopher Danielle Bromwich explore how much participants’ fully informed consent can count as ample protection in cure-related studies, and when that consent counts as full. Philosophers Dan Wikler, Nick Evans (with first author public health expert Regina Brown), Rahul Kumar, and Frances Kamm assess when, if ever, the potential public health benefits of research—e.g., finding a cure for HIV—can warrant placing individual study participants at high net risk. An afterword asks how these investigations should affect future directions in research ethics.

Many contributions agree that myriad ways exist to justify studies that, at least on the face of it, run counter to the best medical interests of candidate participants. Furthermore, one need not be a utilitarian to argue as much. Even so-called contractualist ethicists such as Rahul Kumar can justify such studies, provocative though they may be for current culture in clinical study oversight. That culture, these articles suggest, is hard to defend from a wide spectrum of ethical theories.

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NOTE: This post will be cross-published at BMJ Opinion.

A Matter of Life and Death

10 Jan, 17 | by bearp

Guest Post by Professor Lynn Turner-Stokes

Re: A matter of life and death – controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness

In an article published in the JME, I highlight the confusion that exists amongst many clinicians, lawyers and members of the public about decisions with withdraw life-sustaining treatments from patients in permanent vegetative and minimally conscious states.

Recent improvements in acute care for patient who have suffered catastrophic brain injury undoubtedly save lives. However, some patients who would otherwise have died now survive but remain profoundly disabled. Many patients experience a brief period of unconsciousness (or ‘coma’) lasting a few days or weeks. However, an unfortunate few with very severe brain injury remain in a vegetative and minimally conscious state (VS/MCS) for many months – or in some cases permanently.

Unfortunately the lay press, and even much of the medical literature, tends to conflate VS/MCS with coma, but they are in fact very different. Coma is a state of ‘unrousable unresponsiveness’ from which the patient cannot be awakened. It rarely persists for more than a few days or weeks, as the large majority of patients will either die or start to regain consciousness. Patients in VS or MCS are awake, but have either very limited awareness of themselves and their environment (MCS), or none at all (VS). With supportive treatment, many will live in these states for a decade or more.

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