Journal of Medical Ethics

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The concise argument: the importance of consent and choice

Mon, 2019-05-13 12:58

When Beauchamp and Childress articulated the necessary and sufficient conditions for informed consent, they might have thought that would be the final word on what informed consent is.1 It’s emphasis in the Belmont Report,2 the Nuremberg Code,3 the Helsinki Declaration4 and numerous codes of professional ethics seems more than sufficient for emphasising its importance. Nonetheless, its place as the central issue for medical ethics appears undiminished and Pubmed lists 6192 publications with ‘Informed Consent’ in the title since 1979.

One view of this is that medical ethics has channelled too much intellectual effort into consent, perhaps at the expense of other important ethical issues. Papers in this issue of the Journal of Medical Ethics suggest that the discussion of consent continues because of the need to consider what it means in new contexts, how it can be a challenge in some...

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Needs must: living donor liver transplantation from an HIV-positive mother to her HIV-negative child in Johannesburg, South Africa

Mon, 2019-05-13 12:58

The world’s first living donor liver transplant from an HIV-positive mother to her HIV-negative child, performed by our team in Johannesburg, South Africa (SA) in 2017, was necessitated by disease profile and health system challenges. In our country, we have a major shortage of donor organs, which compels us to consider innovative solutions to save lives. Simultaneously, the transition of the HIV pandemic, from a death sentence to a chronic illness with excellent survival on treatment required us to rethink our policies regarding HIV infection and living donor liver transplantation . Although HIV infection in the donor is internationally considered an absolute contraindication for transplant to an HIV-negative recipient, there have been a very small number of unintentional transplants from HIV-positive deceased donors to HIV-negative recipients. These transplant recipients do well on antiretroviral medication and their graft survival is not compromised. We have had a number of HIV-positive parents in our setting express a desire to be living liver donors for their critically ill children. Declining these parents as living donors has become increasingly unjustifiable given the very small deceased donor pool in SA; and because many of these parents are virally suppressed and would otherwise fulfil our eligibility criteria as living donors. This paper discusses the evolution of HIV and transplantation in SA, highlights some of the primary ethical considerations for us when embarking on this case and considers the new ethical issues that have arisen since we undertook this transplant.

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The biobank consent debate: Why 'meta-consent is not the solution?

Mon, 2019-05-13 12:58

Over the past couple of decades, there has been an ongoing, often fierce, debate about the ethics of biobank participation. One central element of that debate has concerned the nature of informed consent, must specific reconsent be gained for each new use, or user, or is broad consent ethically adequate? Recently, Thomas Ploug and Søren Holm have developed an alternative to both specific and broad consent: what they call a meta-consent framework. On a meta-consent framework, participants can choose the type of consent framework they require, for different kinds of use, different types of user and so on. Meta-consent involves a distinctive kind of design of the consent process. Here it is argued, first, that although a meta-consent framework does not wrong participants, Ploug and Holm understate the likely costs and burdens of such a framework, so there are good practical reasons not to offer it. Second, although Ploug and Holm allude to some ethical considerations that might seem to ground an ethical argument for providing meta-consent, they do not offer any sound argument, and it does not wrong participants in any way to fail to offer them the opportunity to design their own consent process.

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The biobank consent debate: why 'meta-consent is still the solution!

Mon, 2019-05-13 12:58

In a recent article in the Journal of Medical Ethics, Neil Manson sets out to show that the meta-consent model of informed consent is not the solution to perennial debate on the ethics of biobank participation. In this response, we shall argue that (i) Manson’s considerations on the costs of a meta-consent model are incomplete and therefore misleading; (ii) his view that a model of broad consent passes a threshold of moral acceptability rests on an analogy that misconstrues how biobank research is actually conducted and (iii) a model of meta-consent is more in tune with the nature of biobank research and enables autonomous choice.

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Informed consent for functional MRI research on comatose patients following severe brain injury: balancing the social benefits of research against patient autonomy

Mon, 2019-05-13 12:58

Functional MRI shows promise as a candidate prognostication method in acutely comatose patients following severe brain injury. However, further research is needed before this technique becomes appropriate for clinical practice. Drawing on a clinical case, we investigate the process of obtaining informed consent for this kind of research and identify four ethical issues. After describing each issue, we propose potential solutions which would make a patient’s participation in research compatible with her rights and interests. First, we defend the need for traditional proxy consent against two alternative approaches. Second, we examine the impact of the intensive care unit environment on the informed consent process. Third, we discuss the therapeutic misconception and its potential influence on informed consent. Finally, we deal with issues of timing in recruiting participants and related factors which may affect the risks of participation.

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The Two tragedies argument

Mon, 2019-05-13 12:58

Opposition to induced abortion rests on the belief that fetuses have a moral status comparable to beings like us, and that the loss of such a life is tragic. Antiabortion, or pro-life, theorists argue that (1) it is wrong to induce abortion and (2) it is wrong to allow others to perform induced abortion. However, evidence suggests that spontaneous abortion kills far more fetuses than induced abortion, and critics argue that most pro-life theorists neglect the threat of spontaneous abortion and ought to do more to prevent it. Friberg-Fernros contends such an obligation would be implausibly strong, arguing that induced abortions are far worse than spontaneous abortions because while both involve the tragedy of the death of the fetus, induced abortion involves a second tragedy—one person killing another. I argue this two tragedies argument fails to explain what is morally relevant about induced abortion.

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Canadian neurosurgeons views on medical assistance in dying (MAID): a cross-sectional survey of Canadian Neurosurgical Society (CNSS) members

Mon, 2019-05-13 12:58
Background

The Supreme Court of Canada removed the prohibition on physicians assisting in patients dying on 6 February 2015. Bill C-14, legalising medical assistance in dying (MAID) in Canada, was subsequently passed by the House of Commons and the Senate on 17 June 2016. As this remains a divisive issue for physicians, the Canadian Neurosurgical Society (CNSS) has recently published a position statement on MAID.

Methods

We conducted a cross-sectional survey to understand the views and perceptions among CNSS members regarding MAID to inform its position statement on the issue. Data was collected from May to June 2016.

Results

Of the 300 active membes of the CNSS who recevied the survey, 89 respondents completed the survey, 71% of whom were attending neurosurgeons and 29% were neurosurgery residents. Most respondents,74.2%, supported the right of physicians to participate in MAID with 7.8% opposing. 37% had current patients in their practice fitting the criteria for MAID. 23.6% had been asked by patients to assist with MAID, but only 11% would consider personally providing it. 84% of neurosurgeons surveyed supported the physicians’ right to conscientious objection to MAID while 21% thought attending surgeons should be removed from the inquiry and decision-making process. 43.8% agreed that the requirment to refer a patient to a MAID service should be mandatory. Glioblastoma multiforme (65%), quadriplegia/quadriparesis secondary to spinal tumour/trauma (54%) and Parkinson’s disease (24%) were the most common suggested potential indications for MAID among the neurosurgical population.

Conclusions

Our results demonstrate that most neurosurgeons in Canada are generally supportive of MAID in select patients. However, they also strongly support the physicians’ right to conscientious objection.

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We dont need unilateral DNRs: taking informed non-dissent one step further

Mon, 2019-05-13 12:58

Although shared decision-making is a standard in medical care, unilateral decisions through process-based conflict resolution policies have been defended in certain cases. In patients who do not stand to receive proportional clinical benefits, the harms involved in interventions such as cardiopulmonary resuscitation seem to run contrary to the principle of non-maleficence, and provision of such interventions may cause clinicians significant moral distress. However, because the application of these policies involves taking choices out of the domain of shared decision-making, they face important ethical and legal problems, including a recent challenge to their constitutionality. In light of these concerns, we suggest a re-conceptualization of informed non-dissent as an alternative approach in cases where the application of process-based policies is being considered. This clinician-directed communication model still preserves what is valuable in such policies and salvages professional integrity, while minimising ethical and legal challenges.

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Differential payment to research participants in the same study: an ethical analysis

Mon, 2019-05-13 12:58

Recognising that offers of payment to research participants can serve various purposes—reimbursement, compensation and incentive—helps uncover differences between participants, which can justify differential payment of participants within the same study. Participants with different study-related expenses will need different amounts of reimbursement to be restored to their preparticipation financial baseline. Differential compensation can be acceptable when some research participants commit more time or assume greater burdens than others, or if inter-site differences affect the value of compensation. Finally, it may be permissible to offer differential incentive payments if necessary to advance the goals of a study. We encourage investigators and Institutional Review Boards to think about whether to offer payment, in what amounts and for what purpose, and also to consider whether differential payment can help promote the scientific and ethical goals of clinical research.

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Obesity, equity and choice

Mon, 2019-05-13 12:58

Obesity is often considered a public health crisis in rich countries that might be alleviated by preventive regulations such as a sugar tax or limiting the density of fast food outlets. This paper evaluates these regulations from the point of view of equity. Obesity is in many countries correlated with socioeconomic status and some believe that preventive regulations would reduce inequity. The puzzle is this: how could policies that reduce the options of the badly off be more equitable? Suppose we distinguish: (1) the badly off have poor options from (2) the badly off are poor at choosing between their options (ie, have a choosing problem). If obesity is due to a poverty of options, it would be perverse to reduce them further. Some people in public health say that preventive regulations do not reduce options but, I shall argue, they are largely wrong. So the equity case for regulations depends on the worst off having a choosing problem. It also depends on their having a choosing problem that makes their choices against their interests. Perhaps they do. I ask, briefly, what the evidence has to say about whether the badly off choose against their interests. The evidence is thin but implies that introducing preventive regulations for the sake of equity would be at least premature.

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Equity and preventive regulations

Mon, 2019-05-13 12:58

In ‘Obesity, equity and choice’ (J Med Ethics 2018;0:1–7. doi:10.1136/medethics-2018-104848), Timothy Wilkinson argues that preventive regulations to address obesity, such as taxes on sugary drinks, are at worst inequitable and at best fail to increase or improve equity. He concludes that we do not yet have good reasons to adopt them. I argue that equity considerations are not as problematic for preventive regulations as Wilkinson suggests.

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Should the deceased be listed as authors?

Mon, 2019-05-13 12:58

Sometimes participants in research collaboration die before the paper is accepted for publication. The question we raise in this paper is how authorship should be handled in such situations. First, the outcome of a literature survey is presented. Taking this as our starting point, we then go on to discuss authorship of the dead in relation to the requirements of the Vancouver rules. We argue that in principle the deceased can meet the requirements laid down in these authorship guidelines. However, to include a deceased researcher as author requires a strong justification. The more the person has been involved in the research and writing process before he or she passes away, the stronger the justification for inclusion.

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Ethics of crisis sedation: questions of performance and consent

Mon, 2019-05-13 12:58

This paper focuses on the practice of injecting patients who are dying with a relatively high dose of sedatives in response to a catastrophic event that will shortly precipitate death, something that we term ‘crisis sedation.’ We first present a confabulated case that illustrates the kind of events we have in mind, before offering a more detailed account of the practice. We then comment on some of the ethical issues that crisis sedation might raise. We identify the primary value of crisis sedation as allowing healthcare professionals to provide some degree of reassurance to patients, their families and the professionals who are caring for them. Next we focus on the issue of informed consent. Finally, we ask whether continuous deep sedation might be preferable to crisis sedation in scenarios where potential catastrophic events can be anticipated.

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Is it ethical to provide IVF add-ons when there is no evidence of a benefit if the patient requests it?

Mon, 2019-05-13 12:58

In vitro fertilisation (IVF) ‘add-ons’ are therapeutic or diagnostic tools developed in an endeavour to improve the success rate of infertility treatment. However, there is no conclusive evidence that these interventions are a beneficial or effective adjunct of assisted reproductive technologies. Additionally, IVF add-ons are often implemented in clinical practice before their safety can be thoroughly ascertained. Yet, patients continue to request and pay large sums for such additional IVF tools. Hence, this essay set out to examine if it is ethical to provide IVF add-ons when there is no evidence of a benefit if the patient requests it. In order to determine what is ethical—namely, morally good and righteous, the question was considered in relation to three key values of medical ethics—autonomy, beneficence and non-maleficence. It was determined that providing IVF add-ons might be morally acceptable in specific circumstances, if true informed consent can be given, there is a potential of cost-effective physiological or psychological benefit and the risk of harm is minimal, particularly with regard to the unborn child.

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In response to Ballantyne and Schaefers 'Consent and the ethical duty to participate in health data research

Mon, 2019-05-13 12:58

We welcome Ballantyne & Schaefer’s discussion of the issues concerning consent and use of health data for research. In response to their acknowledgement of the need for public debate and discussion, we provide evidence from our own public consultation on this topic.

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Taxonomy of justifications for consent waivers: When and why are public views relevant?

Mon, 2019-05-13 12:58

We welcome Hepgul et al’s contribution to the debate about when and why to grant consent waivers for the secondary use of clinical data.1 Their paper reports on a focus group study of patient attitudes to clinical data sharing. Their results align with existing research showing that patients’ and publics’ comfort with secondary research is influenced by the following considerations:

  • Type of data being linked— linking different types of health data is more acceptable than linking data across the public sector, or between the public and private sectors2

  • Trust in the organisations conducting research3

  • Anonymity of the data4 5

  • Purpose—research that offers public benefit is more acceptable6 7

  • How profits are managed and shared2

  • Commercialisation of health data—there is general discomfort with commercial or for-profit research8

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