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Public Health

What is a moral epigenetic responsibility?

23 Aug, 16 | by miriamwood

Guest Post: Charles Dupras & Vardit Ravitsky

The ambiguous nature of epigenetic responsibility

Epigenetics is a recent yet promising field of scientific research. It explores the influence of the biochemical environment (food, toxic pollutants) and the social environment (stress, child abuse, socio-economic status) on the expression of genes, i.e. on whether and how they will switch ‘on’ or ‘off’. Epigenetic modifications can have a significant impact on health and disease later in life. Most surprisingly, it was suggested that some epigenetic variants (or ‘epi-mutations’) acquired during one’s life could be transmitted to offspring, thus having long-term effects on the health of future generations.

Epigenetics is increasingly capturing the attention of social scientists and ethicists, because it brings attention to the importance of environmental exposure for the developing foetus and child as a risk factor for common diseases such as cardiovascular, diabetes, obesity, allergies and cancers. Scholars such as Hannah Landecker, Mark Rothstein and Maurizio Meloni have argued that epigenetics may be used to promote various arguments in ongoing debates on environmental and social justice, as well as intergenerational equity. Some even suggested that epigenetics could lead to novel ways of thinking about moral responsibilities for health.

Is it fair that disadvantaged populations are exposed to an inequitable share of harmful environments – such as polluted areas – that are epigenetically-detrimental to their health? Who should be held responsible for protecting children and future generations from epigenetic harm induced by their environments? Should we hold the parents accountable for detrimental epigenetic impact of their behavior on their children? And how should we manage the possible risks of stigmatization and discrimination of people that we consider blameworthy of inflicting epigenetic harm on others? These sensitive questions call for a nuanced investigation of the impact epigenetics can have on our understanding of moral responsibility.

more…

In Praise of Ambivalence: “Young” Feminism, Gender Identity, and Free Speech

13 Jul, 16 | by bearp

By Brian D. Earp (@briandavidearp)

* Note: this article was first published online at Quillette magazine.

Introduction

Alice Dreger, the historian of science, sex researcher, activist, and author of a much-discussed book of last year, has recently called attention to the loss of ambivalence as an acceptable attitude in contemporary politics and beyond. “Once upon a time,” she writes, “we were allowed to feel ambivalent about people. We were allowed to say, ‘I like what they did here, but that bit over there doesn’t thrill me so much.’ Those days are gone. Today the rule is that if someone—a scientist, a writer, a broadcaster, a politician—does one thing we don’t like, they’re dead to us.”

I’m going to suggest that this development leads to another kind of loss: the loss of our ability to work together, or better, learn from each other, despite intense disagreement over certain issues. Whether it’s because our opponent hails from a different political party, or voted differently on a key referendum, or thinks about economics or gun control or immigration or social values—or whatever—in a way we struggle to comprehend, our collective habit of shouting at each other with fingers stuffed in our ears has reached a breaking point.

It’s time to bring ambivalence back.

A Fatal Retraction

Given the state of politics these days, Dreger’s remarks could have been triggered by just about anything; but as it happens, she was reflecting on a controversial decision by the editors of Everyday Feminism, a popular online feminist magazine, to pull an essay of hers on sex education. The essay had earlier been published by Pacific Standard with the provocative title, “What If We Admitted to Children That Sex Is Primarily About Pleasure?”

The essay wasn’t the problem. In fact, the editors liked the essay: they had reached out to Dreger to ask her permission to republish it, which is how this whole episode began. Instead, the problem was some other, unrelated material that Dreger had published elsewhere—a kind of “guilt by association” with her own work.

This is how the editors explained their decision (key bits in bold):

What happened was that we decided to pull the article from circulation shortly after it went up. When we asked permission [to republish] it we weren’t aware of some of the articles you’ve published on trans issues and after a reader brought it to our attention [we] looked into them.

Trans issues means transgender issues. The editor went on:

We … realized that while we very much valued the information in the article on teaching children that sex is about pleasure, the views expressed in several of your other articles directly conflicts with the work we’re trying to do in Everyday Feminism. For that reason, we decided to pull the article.

If you aren’t familiar with Dreger’s work, you are probably wondering what she’s written about trans issues that the editors found so troubling—troubling enough to retract an unrelated essay. And if you are familiar with Dreger’s work, you are probably wondering even more. This is because Dreger is widely regarded as being a supporter of trans rights, as well as rights for intersex people, for gender non-conformers generally, and for other marginalized groups, all of which seems broadly consistent with the aims of Everyday Feminism.

Dreger’s support for sexual minorities is not idle. Instead, she has devoted the better part of her professional career to blowing up narrow-minded gender identity norms, against sometimes huge resistance, and to fighting oppressive attitudes about sex and gender within the more traditional corners of science and medicine. Her work on intersex ethics has been especially influential.

So what could be going on behind the curtain?

more…

Special “Editor’s Choice” Issue of the Journal of Medical Ethics Now Online

28 May, 16 | by bearp

by Brian D. Earp / (@briandavidearp)

On behalf of the Journal of Medical Ethics, I am excited to announce the publication of a special “Editor’s Choice” issue, now online at the journal website. In a rare turn for the journal, the entire issue made up of “Editor’s Choice” papers, with invited (peer-reviewed) papers from both up-and-coming and established scholars.

Editor-in-Chief Professor Julian Savulescu explains the significance of the issue: “Our self-imposed brief was to concentrate on excellent but less well-known scholars from a variety of perspectives, especially those who are young and up and coming, alongside some more established contributors.”

Although no particular topic assignment was given, Professor Savulescu remarks that “it is interesting that [the] contributions aggregate naturally around four perennial clusters: the concept of the good life, end of life, public health and new technologies (enhancement/selection).”

Here are some highlights from each contribution to the issue: 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.

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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…

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…

Should Doctors Perform “Minor” Forms of Female Genital Mutilation (FGM) as a Compromise to Respect Culture?

25 Feb, 16 | by bearp

by Brian D. Earp / (@briandavidearp), with a separate guest post by Robert Darby

A small surgical “nick” to a girl’s clitoris or other purportedly minimalist procedures on the vulvae of young women and girls should be legally permitted, argue two gynecologists this week in the Journal of Medical Ethics. Their proposal is offered as a “compromise” solution to the vexed issue of so-called female genital cutting or mutilation (FGM).

According to the authors, Kavita Shah Arora and Allan J. Jacobs, legally restricting even “minor” forms of non-therapeutic, non-consensual female genital cutting is “culturally insensitive and supremacist and discriminatory towards women.” Discriminatory, apparently, because non-therapeutic, non-consensual male genital cutting (a.k.a. male circumcision) is widely tolerated in Western societies; why shouldn’t women and girls be allowed to participate in — or be subjected to — analogous cultural rites that are important to members of their own groups?

I take issue with the authors’ proposal. In a commentary published in response to their piece (currently available “online first” along with two other commentaries: see here and here), I argue that to allow supposedly minimalist female genital cutting procedures before an age of consent in Western societies would result in numerous ethical, legal, political, regulatory, medical, and sexual problems, creating a fiasco. So problematic, in my view, is the proposal by Arora and Jacobs, that I have prepared a separate online supplementary appendix to expand upon my published commentary, in which I address each of their specific claims and arguments one by one: see here.

Rather than continuing to tolerate childhood male circumcision, and using this as a benchmark for allowing supposedly “minor” forms of FGM, I argue that we should instead be moving in the opposite direction. In other words, I suggest that the time has come to consider a less tolerant stance toward both procedures. As I write in my piece:

“Ultimately, I suggest that children of whatever sex or gender should be free from having healthy parts of their most intimate sexual organs either damaged or removed, before they can understand what is at stake in such an intervention and agree to it themselves.”

In the initial flurry of media coverage of the controversial new proposal by Arora and Jacobs, some commentators have attempted to drive a wedge between male and female forms of non-therapeutic genital alteration by referring to supposedly distinct symbolic meanings (FGM is “all about” controlling the sexuality of women, according to this view, whereas male circumcision is claimed not to be rooted in norms of sexual control), as well as health implications (FGM “has no health benefits,” it is claimed, whereas male circumcision does or at least may).

However, both of these claims are misleading at best, and at worst, downright false, as I (among other scholars who specialize in this area) have argued at length in other contexts: see also here, here, and here. For a short, reader-friendly introduction to the empirical and conceptual problems with these oft-repeated tropes, please see my essay in Aeon magazine, “Boys and Girls Alike.”

This is not the place to re-state my arguments. Instead, interested readers can explore the links above and reach their own conclusions. What I would like to do now is turn to an interesting new commentary on the proposal by Arora and Jacobs by Dr. Robert Darby, a medical historian and expert in male and female genital cutting rituals as they take place across a range of social contexts. His commentary is published below as a guest post on this blog. Please note that its contents should be taken to reflect the views of Dr. Darby, and not necessarily those of the Journal of Medical Ethics, its editors, or anyone else. 

Male and Female Genital Cutting: A Sex-Neutral Approach?

By Robert Darby, Ph.D.

Two contrasting views on female genital cutting (FGC) have been aired in recent weeks. Writing in the Journal of Medical Ethics, two American obstetricians, Kavita Arora and Allan Jacobs, argue that Western societies should tolerate – and doctors should perform – purportedly mild forms of non-therapeutic genital cutting on female infants and girls if the parents so request. In contrast, Ms. Meiwita Budiharsana, a lecturer in public health in Indonesia – where such forms of FGC are very common and increasingly medicalized – argues that the authorities should discourage such practices and that medical personnel should not perform them.

The situation seems rich in paradox. Two doctors from a society that has traditionally abhorred (and in fact criminalised) any form of FGC, believe that certain mild forms should be permitted. At the same time, a health expert from a society where certain mild forms of FGC are the norm believes that this is wrong and that such practices should be opposed.

What is going on here?

In this commentary I would like to focus primarily on the short opinion piece from Ms. Budiharsana. This is partly because Arora and Jacobs’s paper has already received both thoughtful peer commentary as well as heated discussion in the media (and is likely to receive much more); and partly because I think that the paper by Ms. Budiharsana in itself provides an interesting commentary on Arora and Jacobs’s controversial proposal.

more…

The Unbearable Asymmetry of Bullshit

16 Feb, 16 | by bearp

By Brian D. Earp (@briandavidearp)

* Note: this article was first published online at Quillette magazine. The official version is forthcoming in the HealthWatch Newsletter; see http://www.healthwatch-uk.org/.

Introduction

Science and medicine have done a lot for the world. Diseases have been eradicated, rockets have been sent to the moon, and convincing, causal explanations have been given for a whole range of formerly inscrutable phenomena. Notwithstanding recent concerns about sloppy research, small sample sizes, and challenges in replicating major findings—concerns I share and which I have written about at length — I still believe that the scientific method is the best available tool for getting at empirical truth. Or to put it a slightly different way (if I may paraphrase Winston Churchill’s famous remark about democracy): it is perhaps the worst tool, except for all the rest.

Scientists are people too

In other words, science is flawed. And scientists are people too. While it is true that most scientists — at least the ones I know and work with — are hell-bent on getting things right, they are not therefore immune from human foibles. If they want to keep their jobs, at least, they must contend with a perverse “publish or perish” incentive structure that tends to reward flashy findings and high-volume “productivity” over painstaking, reliable research. On top of that, they have reputations to defend, egos to protect, and grants to pursue. They get tired. They get overwhelmed. They don’t always check their references, or even read what they cite. They have cognitive and emotional limitations, not to mention biases, like everyone else.

At the same time, as the psychologist Gary Marcus has recently put it, “it is facile to dismiss science itself. The most careful scientists, and the best science journalists, realize that all science is provisional. There will always be things that we haven’t figured out yet, and even some that we get wrong.” But science is not just about conclusions, he argues, which are occasionally (or even frequently) incorrect. Instead, “It’s about a methodology for investigation, which includes, at its core, a relentless drive towards questioning that which came before.” You can both “love science,” he concludes, “and question it.”

I agree with Marcus. In fact, I agree with him so much that I would like to go a step further: if you love science, you had better question it, and question it well, so it can live up to its potential.

And it is with that in mind that I bring up the subject of bullshit.

more…

Zika, Gandhi and the CDC

11 Feb, 16 | by BMJ

Guest Post by Agomoni Ganguli Mitra

Three pieces of news over the last weeks particularly troubled me.  In the first, and perhaps most radical of them all, Latin American governments began to urge women not to become pregnant over the next couple of years, as a public health measure to restrict the number of children born with microcephaly, potentially caused by the Zika virus currently plaguing the region.  The second came from the Indian Minister of Women and Child Development, Maneka Gandhi, one of the highest ranking officials in the current Indian government.  For years, India has struggled with non-medical sex-selective abortion (and female infanticide) in such significant numbers, that the sex-ratio for infants in certain regions has become heavily skewed.  Despite sex-determination being illegal since 1994, the practice has continued with the complicity of physicians and clinics, and in some cases without the consent of the pregnant women themselves.  At a conference in early February, Gandhi suggested that an alternative to the current, ineffective policy of criminalising those who provide ultrasounds and sex-selective abortions, would be to register and monitor every pregnant woman in the country to ensure that female foetuses are brought to term and female infants are not killed shortly after birth.  The last and most recent piece is perhaps the least shocking of them all, if only because we almost take it for granted that women’s health and lifestyles choices are seen to be closely related to their ability and inclination to produce babies.  The US government’s Centre for Disease Control and Prevention (CDC), in a bulletin patronisingly subtitled Why Take the Chance?, has suggested that women should think carefully before mixing sex and alcohol intake, if they are trying to get pregnant, or (and this is what makes it particularly problematic) could unknowingly be pregnant.

On the face of it, these are three very different sets of circumstances, geographical, political and social contexts, and in applied ethics, context is crucial to rigorous analysis.  And yet I am struck by how, ironically, these policies and policy proposal fail to be contextualised within broader considerations of reproductive rights and justice by policy makers. more…

Should Doctors Strike?

9 Nov, 15 | by bearp

 

Should doctors strike?

Is it ethical for doctors to go on strike, potentially putting their patients at risk of getting inadequate treatment?

As the BBC reports, ministers and junior doctors are currently “locked in a dispute.” One possible outcome of this disagreement is a physicians’ strike, which raises a number of tricky ethical questions. But before we get into those questions, it might be helpful to take a look at a quick sketch of what the problem is all about (from the BBC article):

Junior doctors’ leaders are objecting to the prospect of a new contract. The government has described the current arrangements as ‘outdated’ and ‘unfair,’ pointing out they were introduced in the 1990s. Ministers drew up plans to change the contract in 2012, but talks broke down last year. The government has indicated it will impose the new contract next year in England. The BMA has responded by initiating the industrial action process. …

The latest information provided by the government, which is the most detailed so far, includes an 11% rise in basic pay for doctors. But that comes at a price. Other elements of the pay package are being curbed.

The prospect of a strike appears to be firmly on the table: “Doctors can take strike action but only if it affects non-emergency care. The last time this happened was during [a] pensions dispute in 2012, but that was the first time such action had been taken for almost 40 years. Doctors still attend work – so they are ready for urgent and emergency cases.”

The Journal of Medical Ethics has tackled this issue before. Writing for the journal in 2013, John Park and Scott Murray gave an analysis of the 2012 “pensions dispute” just mentioned.

Last year in June, British doctors went on strike for the first time since 1975. Amidst a global economic downturn and with many health systems struggling with reduced finances, around the world the issue of public health workers going on strike is a very real one. Almost all doctors will agree that we should always follow the law, but often the law is unclear or does not cover a particular case. Here we must appeal to ethical discussion.

The General Medical Council, in its key guidance document for practising doctors … claims that ‘Good doctors make the care of their patients their first concern.’ Is this true? And if so, how is this relevant to the issue of striking? One year on since the events, we carefully reflect and argue whether it was right for doctors to pursue strike action, and call for greater discussion of ethical issues such as the recent strikes, particularly among younger members of the profession.

In light of the current turmoil, the Journal of Medical Ethics welcomes submissions on the ethics of physicians striking, including papers which build on, critique, or respond to the work of Park and Murray. Their 2013 paper can be accessed here. As Associate Editor Dominic Wilkinson stated in an interview:

In their submissions, authors should focus on ethical questions and put their discussion in the context of ongoing international debate and existing literature. Possible questions include, for example: what is a fair level of remuneration for public sector healthcare workers, including doctors? Should all doctors be paid equally? Should antisocial hours be rewarded financially? In a financially constrained environment, should doctors’ pay go down in order to protect funding for health care provision?

Papers can be submitted to the Journal of Medical Ethics here. Author instructions are here.

The Journal of Medical Ethics remains the top-ranked journal in bioethics for 2015 according to Google Scholar Metrics, with an impact factor of 1.511 and an h5-index of 28. We look forward to seeing your submissions.

Check out the current issue by clicking here.

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