You don't need to be signed in to read BMJ Blogs, but you can register here to receive updates about other BMJ products and services via our Group site.

clinical ethics

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…

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.

Nurses Cannot be Good Catholics

31 Mar, 16 | by BMJ

Guest Post by John Olusegun Adenitire

It seems that if you are a nurse you cannot be a good Catholic.  Or, better: if you want to work as a nurse then you might have to give up some of your religious beliefs.  A relatively recent decision of the UK Supreme Court, the highest court in the country, seems to suggest so.  In a legal decision that made it into the general press (see here), the Supreme Court decided that two Catholic midwives could not refuse to undertake administrative and supervisory tasks connected to the provision of abortions.

To be sure, no one asked the nurses to directly assist in the provision of abortions.  The Abortion Act 1967 says that “No person shall be under any duty … to participate in any treatment authorised by this Act to which he has a conscientious objection.”  The Nurses argued that this provision of the Act should be understood widely.  Not only should they be allowed to refuse to directly assist in abortion services: they should also be entitled to refuse to undertake managerial and supervisory tasks if those were linked to abortion services.  The nurses’ employer was not impressed; neither was the Supreme Court which ruled that the possibility to conscientiously object only related to a ‘hands-on’ capacity in the provision of abortion services.

In a recent paper in the JME (available here) I have argued, albeit only indirectly, that this decision is only half-correct.  Nurses and other medical professionals have a human right to object to the provision of a wide range of services which they deem incompatible with their conscience.  I say that the decision of the Supreme Court is only half-correct because the Court explicitly avoided investigating the possibility of the nurses’ human right to conscientious objection.  Under the Human Rights Act, individuals have a right to freedom of conscience and religion.  That right may, in appropriate circumstances, entail the right for nurses to object to being involved in administrative and supervisory duties connected with abortion services.  If you ask me how the Supreme Court avoided having to consider the nurses’ human right to freedom of conscience and religion I couldn’t tell you.  I bet neither could any of the Law Dons at Oxford.

I realise that by appealing to human rights I am not necessarily making the nurses’ case any more deserving of sympathy that it already is(n’t). more…

Thumbs Up for Privacy

30 Mar, 16 | by Iain Brassington

“Hey, Iain,” says Fran, a Manchester alumna, “What do you make of this?”  I won’t bother rehearsing the whole scenario described in the post, but the dilemma it describes – set out by one Simon Carley – is fairly easily summarised: you work in A&E; a patient is rolled in who’s unconscious; there’s no ID, no medic alert bracelet – in short, nothing to show who the patient is or what their medical history is; but the patient does have an iPhone that uses thumbprints as a security feature.  And it might be that there’s important information that’d be accessible by using the unconscious patient’s thumb to get at it – even if it’s only a family member who might be able to shed some light on the patient’s medical history.

It’s a potentially life-or-death call.  Would it be permissible to hold the phone to the patient’s thumb?

For those who think that privacy is a side-constraint – that is, a moral consideration that should not be violated – the answer will be obvious, and they’ll probably stop reading around about… NOW.  After all, if you’re committed to that kind of view, it’s entirely possible that the question itself won’t make a great deal of sense (tantamount to “Is it OK to do this thing that is plainly not OK?”), or at least not be worth asking.  But I don’t think that privacy is a side-constraint; I’m increasingly of the opinion that privacy is a bit of an iffy concept across the board, for reasons that needn’t detain us here, but that might be implied by at least some of what follows.  In short, I think that privacy is worth taking seriously as a consideration, but it’s almost certainly not trumps.  At the very least, that’s how I shall handle it here.  (Note here that the problem is one of privacy, not – as the OP has it – confidentiality; it’s a question about how to get information, rather than one of what you can do with information volunteered.  A minor quibble, perhaps, but one worth making.)  Even if I’m wrong about privacy in general, the question still seems to be worth asking, if only to confirm that and why it should not be violated. more…

The Curious Case of Informed Consent for Egg Donation

17 Mar, 16 | by BMJ

Guest Post by Alana Rose Cattapan

As Michael Dunn writes in a recent editorial for the JME, “no medical ethicist worth their salt would deny that consent is a foundational concept in contemporary medical ethics,” and it is an extraordinary understatement to say that much ink has been spilled on the topic. The spaces between consent in theory and in practice is the subject of Dunn’s editorial, where he describes the ways that scholarship about consent fails, at times, to account for the messiness of the real-life process.

Obtaining consent for egg donation is a particularly messy endeavour. We still know relatively little about the long term effects of egg donation, and donors are sometimes seen as secondary players while the recipient of the eggs – the woman carrying a pregnancy and having a child – is viewed as the primary patient. Like other corporeal donations – blood, organ, bone marrow – egg donation presents a curious case of medical treatment in which there are no physiological benefits to the donor. However, in the case of egg donation, the intervention occurs not to save a life, but rather to fulfil someone else’s desire to have a child.

In Canada, where laws prohibit payment and a grey market in paid donors has emerged, the complexities of obtaining informed consent for egg donation are particularly fraught. Donors that receive payment (are they really donors if they are paid?) have to navigate a system where they are seemingly engaged in something illegal and they may not feel empowered to demand the kind of treatment (including follow-up care) to which they are entitled.

Egg donation, then, must be held to a higher standard of consent than other forms of medical treatment, a position also endorsed by a range of experts including the Canadian Fertility and Andrology Society, and the Society of Obstetricians and Gynaecologists of Canada. In 1999, these organizations issued an ethics statement stating explicitly that given the sensitive nature of egg donation, “obtaining voluntary, uncoerced and informed, written consent is crucial to the clinical acceptability of oocyte transfer between women.”

My study of consent forms for egg donation in Canada, published in the JME, reveals some of the curiosities of obtaining consent in this strange in-between place of medicine and reproduction. 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…

A Tool to Help Address Key Ethical Issues in Research

22 Feb, 16 | by BMJ

Guest post by Rebecca H. Li and Holly Fernandez Lynch

One of the most important responsibilities of a clinical project lead at a biotech company or an academic research team is to generate clinical trial protocols. The protocol dictates how a trial will be conducted and details background information on prior research, scientific objectives, study rationale, research methodology and design, participant eligibility criteria, anticipated risks and benefits, how adverse events will be handled, plans for statistical analysis, and other topics. Many protocol authors use as a starting point a “standardised” protocol template from their funder or institution. These templates often provide standard language, and sections for customisation, sometimes with various “pick-and-choose” options based on the nature of the research. They inevitably cover each of the key topics listed above, but often fail to include ethical principles and considerations beyond the regulatory requirement of informed consent. Indeed, the process of protocol writing has traditionally focused on scientific detail, with ethical analysis often left to institutional review boards (IRBs) and research ethics committees (RECs); unfortunately, robust discussion of specific ethical issues is often absent from clinical trial protocols.

When IRBs and RECs convene to review protocols, they are expected to evaluate whether the study will adequately protect enrolled participants. When the protocol fails to address potential ethical concerns explicitly, reviewers are left to speculate: did the investigator consider the concern, but dismiss it as not relevant in this particular context; did the investigator fail to understand the concern; does the investigator have an appropriate plan in place to resolve the concern, but has left it unstated in the protocol? This uncertainty can contribute to delays as reviewers debate among themselves, and can require lengthy back-and-forth with researchers, including series of protocol revisions and re-reviews until clarity is established. In some cases, it may also be that reviewers with less experience or expertise fail to identify an ethical concern that has not been brought to their attention in a protocol. more…

Should Junior Doctors Strike?

25 Jan, 16 | by Iain Brassington

Guest Post by Mark Toynbee, Adam Al-Diwani, Joe Clacey and Matthew Broome

[Editor’s note: Events in the real world have moved more quickly than David or I have; the facts of the junior doctors’ strike have moved on since the paper was published and this post submitted.  Still, the matters of principle remain. – IB]

A strike by junior doctors is planned for January 2016 following failure of the last-ditch ACAS (Advisory, Conciliation and Arbitration Service) mediated talks between the BMA and the Department of Health (via NHS Employers) – see media reports here, here, and here.  Industrial Action had previously been planned for December last year but was suspended at the last minute when both sides agreed to the now failed mediation.  The current regrettable position has resulted from over two years of formal negotiations between the BMA and NHS Employers regarding a new junior doctor contract.  The BMA went to its junior doctor members for a mandate for industrial action last autumn as the talks stalled and received an almost unprecedented mandate with 98% indicating they would be prepared to strike.

Subsequently, many well-known figures voiced their concerns about the ethical and practical implications of industrial action (here and here).  Strikes by doctors are not common, with only one example in the UK in the last generation, but far from unprecedented.  The overwhelming recent ballot result raises many interesting issues, foremost among them the ethical legitimacy of industrial action by doctors, specifically junior doctors.

The term ‘junior doctor’ is often misunderstood.  It applies to all doctors from graduation until completion of specialist training – over 50,000 individuals.  Their roles and responsibilities have evolved significantly over many years; their pay and hours have reduced whilst their debts, costs and responsibilities have increased.  The patient-doctor relationship has also changed with increased emphasis on patient involvement and the promotion of autonomy.

We have looked at arguments proposed during previous instances of doctor industrial action, often from this journal (see this, this, and this) and considered them in the current context.  Absolute ethical objections to doctor industrial action appear old-fashioned, especially when applied to junior doctors.  Concerns about harms caused by doctors withdrawing their labour also seem less sustainable in the light of recent evidence than perhaps would be expected.  Indeed, the ethical responsibilities of doctors may require them to take action if they believe patient care, or the well-being of their colleagues’, is being compromised.

So far there has been strong support for the junior doctors from the Consultant bodies of many Trusts, and the Royal Colleges.  The modern NHS asks more of its junior doctors than ever before, placing ever increasing responsibilities on their shoulders, with ever more challenging working conditions.  With industrial action by junior doctors now likely to go ahead, claims that it would be unethical appear to us to be increasingly hard to justify.

Read the paper here.

R-E-S-P-E-C-T

24 Dec, 15 | by Iain Brassington

Here’s an intriguing letter from one John Doherty, published in the BMJ yesterday:

Medical titles may well reinforce a clinical hierarchy and inculcate deference in Florida, as Kennedy writes, but such constructs are culture bound.

When I worked in outback Australia the patients called me “Mate,” which is what I called them.

They still wanted me to be in charge.

Intriguing enough for me to go and have a look at what this Kennedy person had written.  It’s available here, and the headline goes like this:

The Title “Doctor” in an Anachronism that Disrespects Patients

Oooooo-kay.  A strong claim, and my hackles are immediately raised by the use of “disrespect” as a verb – or as a word at all.  (Don’t ask me why I detest that so; I don’t know.  It’s just one of those things that I will never be able to tolerate, a bit like quiche.)  But let’s see…  It’s not a long piece, but even so, I’ll settle for the edited highlights: more…

Homeopathy, Blacklisting, and the Misuse of Choice

15 Nov, 15 | by Iain Brassington

It seems that homeopathy might at last be facing some serious opposition from within the NHS, with the prospect of its being blacklisted being considered.

There’s any number of people who’ll be entirely on board with that. Homeopathy doesn’t work.  Of course, a lot of medicines turn out not to work, or not to work well.  But the difference between homeopathy and unsuccessful drugs is that the latter are at least more likely to have a plausible mechanism – roughly, one of throwing molecules at other molecules, or coaxing the body to throw molecules at molecules.  Homeopathy doesn’t even have that.  It relies on water having a memory.

At the very best, it contributes nothing. But it does cost money – not much, but more than none, and in the end, the taxpayer has to pony up for it.  Money is being wasted every time the NHS pays for homeopathic treatment, and that looks to be unjust.  (It’s not the most unjust thing in the world, but that’s neither here nor there.  Wrongs are wrongs, even if harms might vary.)

It might even get in the way of effective treatments, if patients use it rather than them.  That might mean that they’re worse off than they could otherwise be.  At the outside, it might mean that they’re a danger to others – they might be spreading illness by dint of not getting treated properly for it.

To that extent, Simon Singh strikes me as being bang on the money: more…

JME blog homepage

Journal of Medical Ethics

Analysis and discussion of developments in the medical ethics field. Visit site



Creative Comms logo

Latest from JME

Latest from JME

Blogs linking here

Blogs linking here