Ethical guidance or epistemological injustice? The quality and usefulness of ethical guidance for humanitarian workers and agencies.

This paper explores the quality and usefulness of ethical guidance for humanitarian aid workers and their agencies. We focus specifically on public health emergencies, such as COVID-19. The authors undertook a literature review and gathered empirical data through semi-structured focus group discussions amongst front-line workers from health clinics in Cox's Bazar, Bangladesh and in the Abyei Special Administrative Area, South Sudan. The purpose of the project was to identify how front-line workers respond to ethical challenges, including any informal or local decision-making processes, support networks, or habits of response.The research findings highlighted a dissonance between ethical guidance and the experiences of front-line humanitarian health workers. They suggest the possibility: (1) that few problems confronting front-line workers are conceived, described, or resolved as ethical problems; and (2) of significant dissonance between available, allegedly practically oriented guidance (often produced by academics in North America and Europe), and the immediate issues confronting front-line workers. The literature review and focus group data suggest a real possibility that there is, at best, a significant epistemic gulf between those who produce ethical guidelines and those engaged in real-time problem solving at the point of contact with people. At worst they suggest a form of epistemic control-an imposition of cognitive shapes that shoehorn the round peg of theoretical preoccupations and the disciplinary boundaries of western academies into the square hole of front-line humanitarian practice.

Ethics briefing

Lack of agency to make the best decisions for patients;Insufficient resources or non-existent resources to provide care to suitable professional standards;Witnessing poor standards of care;Practical experience of medical care clashing with ethical standards taught at medical school and doctors’ own personal ethical standards;Complicity in wrongdoing;End-of-life care decisions. Adequate funding and resourcing Increase staffing Empower doctors Develop an open and sharing workplace culture Provide support for employees Streamline NHS bureaucracy Action by doctors is heavily dependent on having a supportive culture within the workplace. Abortion in the US In May, the US Supreme Court agreed to hear a case concerning a Mississippi state law that would limit abortion to up to 15 weeks in the majority of cases.8 This had led to significant concern among advocates for women’s reproductive rights that, if the law is upheld, the landmark Roe vs Wade Supreme Court judgement, which has provided a constitutional right of access to abortion in the US since the 1970s, could be overturned or limited, leading to devastating effects on abortion rights across the country. The law was enacted in 2018 but was immediately blocked by the lower courts as inconsistent with Supreme Court precedent in Roe, following a challenge from the only abortion provider currently operating in the state.9 The Mississippi law is one of many recent legislative moves made in conservative US states to severely restrict women’s access to abortion.

Ethics briefing

Early reports from hospitals in the Italian city of Bergamo suggested that ventilatory support might need rationing and emergency ‘battlefield’ triage was a real possibility.1 In the UK, several professional bodies, including the British Medical Association and the Royal College of Physicians rapidly developed guidance for doctors should triage become a reality.2 The second issue was the acute shortage of personal protective equipment (PPE). According to a report by Public Health England, after accounting for sex, age, deprivation and region, ‘people of Bangladeshi ethnicity had around twice the risk of death when compared with people of White British ethnicity. Not only is the imprisoning, assault and murder of protestors a violation of the human rights to free speech and free assembly, guaranteed in the 1948 Universal Declaration of Human Rights, but the targeting of medical professionals and interfering in their activities is an abuse of the principle of medical neutrality, enshrined in the Fourth Geneva Convention.8 Not only is this a violation of the rights of doctors and other colleagues, it is also detrimental to the healthcare of patients, diminishing their right to the highest standard of health which is guaranteed by the International Covenant on Economic, Social and Cultural Rights which was ratified by Myanmar in 2017. A piece has been written for the British Medical Journal to raise awareness,10 the BMA has written to the Foreign Secretary requesting that coordinated international action be explored to oppose the human rights abuses of medical professionals, and a joint statement of solidarity with several UK royal medical colleges and other organisations representative of medical professionals has been published, which has collated resources that may be of use to those from abroad looking to offer support in Myanmar and for healthcare professionals in Myanmar also.

Ethics briefing

The NHS often had to treat these complications but this did not extend to providing subsequent corrective cosmetic surgery - for example for scarring.4 The Bill would still allow the procedures for under 18-year-olds from a limited range of registered health professionals (doctors, dentists, pharmacists, nurses) where there was an assessed medical need. The Minister of State (Department of Health and Social Care), Edward Argar MP, offered ‘wholehearted support for the introduction of an age restriction for cosmetic procedures’ noting that ‘it is vital that the regulatory framework around the cosmetics industry enables consumers, particularly vulnerable consumers, to make an informed and safe choice’.5 Abortion – remote services At the BMA’s virtual annual representative meeting (ARM) in September, the BMA adopted policy supporting the continuation of remote services for early medical abortions (EMA) post COVID-19 pandemic. Subsequently, the Court of Appeal also ruled against the group Christian Concern’s challenge to the temporary approval of remote provision of EMAs.6 In the discussion and concluding remarks of the judgement it was noted, among other things, that registered medical practitioners remained ‘in charge throughout the procedure, which has been altered to reflect the changing and challenging times.’(at 49) and the purpose of remote provision ‘was to protect women’s health and to ensure that women were not driven to EMAs outside prescribed and approved settings. The motion calls on the WMA to: support the requests made in the July 2019 letter to the UN Human Rights Council High Commissioner calling for international independent observers to be allowed into the Xinjiang region of China;reaffirm its Statement on Forced and Coerced Sterilisation, asserting that no person, regardless of gender, ethnicity, socio-economic status, medical condition or disability, should be subjected to forced or coerced permanent sterilisation, and call on its members medical associations to advocate against forced and coerced sterilisation in their own countries and globally The motion also recognised the evidence emerging that the Uyghur population are being used to produce PPE for global markets and that WMA members should promote fair and ethical trade in the health sector, and insist that the goods they use are not produced at the expense of the health of workers in the global community.

Ethics briefing

Of the 49 539 members invited to participated, 6674 responded – a response rate of 13.47%.2 In response to a question about what the College’s position on the law on assisted dying should be: 47 per cent of respondents said that the RCGP should oppose a change in the law on assisted dying;40 per cent of respondents said that the RCGP should support a change in the law on assisted dying, providing there is a regulatory framework and appropriate safeguarding processes in place;and 11 per cent of respondents said that the RCGP should have a neutral position on the topic of assisted dying.3 Following the results of the survey, the RCGP Council decided that the College should continue to oppose a change in the law on assisted dying. Belgian doctors acquitted in country’s first criminal euthanasia case As noted in previous Ethics briefings, three Belgian doctors faced criminal charges of “unlawfully poisoning” a 38-year-old woman, Tine Nys, after they assisted her to die under the country’s euthanasia laws.1 All three doctors have now been acquitted.4 Ms Nys’ family had claimed that she did not meet the eligibility criteria of having a serious and incurable mental health disorder and that the doctors carried out the death in an “amateurish manner”.5 The case was the country’s first criminal case involving euthanasia, which has been legal in Belgium since 2002. The BBC reports that all of the bills contain similar provisions – for example, that the patient must be 18 or over, suffering from a terminal illness causing unbearable pain, and cannot be suffering from a psychiatric condition.6 In neighbouring Spain, a bill on euthanasia and assisted suicide passed first stage debate in the Spanish parliament in early February.7 Canada considers expansion of medical assistance in dying (MAID) laws In January 2020, the Canadian Government consulted on the eligibility criteria and request process for medical assistance in dying (MAID).8 The consultation follows a ruling from the Superior Court of Quebec which found that it was “unconstitutional” to limit access to MAID to people for whom “death had become reasonably foreseeable”.9 The Court ruling will come into effect on 11 March 2020 unless an extension is granted by the Court. [...]the conference will explore the implications of the increasing use of genetics and genomics in medicine, including the issues in justice this raises.