Iain Brassington

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data.

An agent who takes his own life acts in violation of the moral law, according to Kant; suicide, and, by extension, assisted suicide are therefore wrong. By a similar argument, and with a few important exceptions, killing is wrong; implicitly, then, voluntary euthanasia is also wrong. Kant's conclusions are uncompelling and his argument in these matters is undermined on considering other areas of his thought. Kant, in forbidding suicide and euthanasia, is conflating respect for persons and respect for people, and assuming that, in killing a person (either oneself or another), we are thereby undermining personhood. But an argument along these lines is faulty according to Kant's own standards. There is no reason why Kantians have to accept that self-killing and euthanasia are contrary to the moral law. Even if some Kantians adhere to this doctrine, others can reject it.

Motivated by Lord Joffe’s Assisted Dying for the Terminally Ill Bill, but with one eye on any possible future legislation, I consider the justifications that might be offered for limiting assistance in dying to those who are suffering unbearably from terminal illness. I argue that the terminal illness criterion and the unbearable suffering criterion are not morally defensible separately: that a person need be neither terminally ill (or ill at all), nor suffering unbearably (or suffering at all) to have a right to assisted dying. Indeed: I shall suggest that the unbearable suffering criterion undermines the Bill (or any proposal like it) wholesale. On the other hand, the criteria taken together are defensible, and this defence would be built on a concern for the protection of the vulnerable. However, I also claim that this implies that the law might justifiably—and maybe even properly—aim to prevent a person from gaining access to that to which they have a serious moral right. This seems paradoxical, and, towards the end of the paper, I seek to tease apart the paradox.

The Commission on Assisted Dying was an unofficial body set up to investigate the legal position on assisted dying in the UK in the autumn of 2010. Its report was published to some degree of media attention in the first week of January 2012; its most headline-grabbing suggestion provided a framework setting out how British law might be reformed to allow assisted dying for the terminally ill. In this paper, I analyse some of the key points of the report and argue that it adds little that could settle – or even add to – the assisted dying debate

One of the characteristics of the relationship between the developed and developing worlds is the ‘brain drain’– the phenomenon by which expertise moves towards richer countries, thereby condemning poorer countries to continued comparative and absolute poverty. It is tempting to see the phenomenon as a moral problem in its own right, such that there is a moral imperative to end it, that is separate from (and additional to) any moral imperative to relieve the burden of poverty. However, it is not clear why this should be so – why, that is, there is a moral reason to stem the flow of expertise in addition to seeking to improve welfare. In this paper, I examine three explanations of the putative moral aspect of the brain drain.

Questions about information inform many debates in bioethics. One of the reasons for this is that at least some level of information is taken by many to be a prerequisite of valid consent. For others, autonomy in the widest sense presupposes information, because one cannot be in control of one’s life without at least some insight into what it could turn out to contain. Yet not everyone shares this view, and there is a debate about whether or not there is a right to remain in ignorance of one’s medical, and especially genetic, information. It is notable, though, that this debate leaves unexamined the assumption that, if a person wants information, he is entitled to it. This paper examines the assumption, specifically in relation to genetics, where learning facts about oneself may reveal facts about other people, particularly one’s close relatives. This may be taken as a violation of their privacy, and since privacy is something that we normally think should be respected, it is worth asking whether one ought to abjure the opportunity to obtain genetic information for the sake of privacy. In effect, there may be an argument to be made not just for a right to remain in ignorance, but for a duty to do so.

It has been claimed in several places that the new genetic technologies allow humanity to achieve in a generation or two what might take natural selection hundreds of millennia in respect of the elimination of certain diseases and an increase in traits such as intelligence. More radically, it has been suggested that those same technologies could be used to instil characteristics that we might reasonably expect never to appear due to natural selection alone. John Harris, a proponent of this genomic optimism, claims in his book Enhancing Evolution that we not only have it in our power to enhance evolution, but that we also have a duty to do so. In this paper, I claim that Harris' hand is strong but that he overplays it nevertheless. He is correct to dismiss the arguments of the anti-enhancement lobby and correct to say that enhancement is permissible; but ‘good’ is different from ‘permissible’ and his argument for the goodness of enhancement is less convincing. Moreover, he is simply wrong to claim that it generates a duty to enhance

This paper examines medicine’s use of technology in a manner from a standpoint inspired by Heidegger’s thinking on technology. In the first part of the paper, I shall suggest an interpretation of Heidegger’s thinking on the topic, and attempt to show why he associates modern technology with danger. However, I shall also claim that there is little evidence that medicine’s appropriation of modern technology is dangerous in Heidegger’s sense, although there is no prima facie reason why it mightn’t be. The explanation for this, I claim, is ethical. There is an initial attraction to the thought that Heidegger’s thought echoes Kantian moral thinking, but I shall dismiss this. Instead, I shall suggest that the considerations that make modern technology dangerous for Heidegger are simply not in the character — the ethos — of medicine properly understood. This is because there is a distinction to be drawn between chronological and historical modernity, and that even up-to-date medicine, empowered by technology, retains in its ethos crucial aspects of a historically pre-modern understanding of technology. A large part of the latter half of the paper will be concerned with explaining the difference

In an article recently published in this journal, I raised a puzzle about the control of genetic information, suggesting a situation in which it might turn out that we have a duty to remain in ignorance about at least some aspects of our own genome. In this article, I propose a way that would make sense of how the puzzle arises, and offer a way to resolve it and similar puzzles in future: in essence, we would consider genetic information to be something the distribution of which may be more or less just. We would not know in advance what a just distribution would be, though, and in some cases there might still be a justice-based reason to deny a person genetic information about himself. However, others might also have justice-based claims to be able to access that information. This suggests that there is a possible world in which one person is entitled to at least some genetic information about another, while that other person—to whom the information refers—is not, and that this world would be just

In 2005, John Harris published a paper in the Journal of Medical Ethics in which he claimed that there was a duty to support scientific research. With Sarah Chan, he defended his claims against criticisms in this journal in 2008. In this paper I examine the defence, and claim that it is not powerful. Although he has established a slightly stronger position, it is not clear that the defence is sufficiently strong to show that there is a duty to support scientific research. Important questions about fairness, about rescue, and about the relationship between reasons and obligations to act can still be raised; and these questions are important enough to destabilize the defence

BackgroundEuthanasia can be thought of as being either active or passive; but the precise definition of “passive euthanasia” is not always clear. Though all passive euthanasia involves the withholding of life-sustaining treatment, there would appear to be some disagreement about whether all such withholding should be seen as passive euthanasia.Main textAt the core of the disagreement is the question of the importance of an intention to bring about death: must one intend to bring about the death of the patient in order for withholding treatment to count as passive euthanasia, as some sources would indicate, or does withholding in which death is merely foreseen belong to that category? We may expect that this unclarity would be important in medical practice, in law, and in policy. The idea that withholding life-sustaining treatment is passive euthanasia is traced to James Rachels’s arguments, which lend themselves to the claim that passive euthanasia does not require intention to end life. Yet the argument here is that Rachels’s arguments are flawed, and we have good reasons to think that intention is important in understanding the moral nature of actions. As such, we should reject any understanding of passive euthanasia that does not pay attention to intent.Short conclusionJames Rachels’s work on active and passive euthanasia has been immensely influential; but this is an influence that we ought to resist.

ABSTRACTJohn Harris suggests that participation in or support for research, particularly medical research, is a moral duty. One kind of defence of this position rests on an appeal to the past, and produces two arguments. The first of these arguments is that it is unfair to accept the benefits of research without contributing something back in the form of support for, or participation in, research. A second argument is that we have a social duty to maintain those practices and institutions that sustain us, such as those which contribute to medical knowledge. This argument is related to the first, but it does not rely so heavily on fairness. Another kind of defence of the duty to research rests on an appeal to the future benefits of research: research is an effective way to discharge a duty to rescue others from serious illness or death, therefore we have a duty to research. I suggest that all three of Harris' lines fail to provide a compelling duty to research and spell out why. Moreover, not only do the lines of argument fail in their own terms: in combination, they turn out to be antagonistic to the very position that Harris wants to defend. While it is not my intention here to deny that there might be a duty to research, I claim that Harris' argument for the existence of such a duty is not the best way to establish it

What attitude would a just state take to the inheritance of property? Would confiscatory taxes on the estate of the deceased be morally acceptable, or would they represent some kind of wrong? While there is a good amount of political philosophical scholarship that considers the desirability of inheritance tax, there appears to be little that has considered it from the perspective of rights theory, asking what kind of thing a right to bequeath or to inherit would be, and whether those putative rights are defeasible. I argue here that putative inheritance rights are best made sense of as interest-rights. However, while agents may have interests in bequest and inheritance, it is also plausible that the community as a whole has interests that would be served by a confiscatory inheritance tax; and if inheritors’ and testators’ interests are strong enough to generate a prima facie right, it is also plausible that the community would have a competing prima facie right. Importantly, there is reason to think that the community’s interests trump the testator’s and the inheritor’s; if there are thoroughgoing rights in respect of inheritance, it is not at all clear that a highly confiscatory tax would violate them.

It is not unknown for participants in discussions of ethics to prefix their claims with a profession of their religious faith—to say, for instance, “Well, I’m a Christian/Muslim/whatever, so I think that …”. Other participants in the debate may well worry about how to respond without the risk of giving offence or appearing ad hominem. Within a teaching environment, the worry may be even more acute. Nevertheless, it is suggested in this paper that such worries should not be allowed to impede debate; moreover, a teacher who let such prefixes pass without critique would be considered a poor teacher. In fact, a kind of duty for a teacher of ethics is to be contrary and to play the apostate

In 2006, a paper in the journal Archives of Pediatric and Adolescent Medicine described a novel case of growth attenuation therapy and other treatments carried out on Ashley, a severely cognitively, neurologically and physically disabled 6-year-old girl. Some of the moral arguments that have sprung up in respect of the so-called “Ashley treatment” are considered, and it is suggested that they all miss something—that the proper treatment of Ashley may have as much to do with doctors’ duties to themselves as with their duties to her. It is suggested that the Ashley treatment may have been in violation of doctors’ self-regarding duties and that this possibility is worthy of further investigation

In a recent paper, it was argued forcefully by Thomas Szasz that it is crucial to the scientific credibility of psychiatry that it abandon talk of the behaviour of the mentally “ill” in terms of causes: such behaviour is not caused by their condition—it simply has reasons, which are discounted by the medical model. It is argued in this paper that Szasz's theory is incomplete for two reasons: first, in assuming that reasons are radically different from causes, it cannot account for the possibility that “sane” behaviour might be just as much caused as “insane”; and second, it tacitly assumes that the origin of behaviour always lies with the agent—a view that arguably is an accident of grammar. Hence while there is no mental illness, this is because there is nothing that could be ill—and this means that there is no such thing as mental “health” either

ABSTRACT John Harris suggests that participation in or support for research, particularly medical research, is a moral duty. One kind of defence of this position rests on an appeal to the past, and produces two arguments. The first of these arguments is that it is unfair to accept the benefits of research without contributing something back in the form of support for, or participation in, research. A second argument is that we have a social duty to maintain those practices and institutions that sustain us, such as those which contribute to medical knowledge. This argument is related to the first, but it does not rely so heavily on fairness. Another kind of defence of the duty to research rests on an appeal to the future benefits of research: research is an effective way to discharge a duty to rescue others from serious illness or death, therefore we have a duty to research. I suggest that all three of Harris' lines fail to provide a compelling duty to research and spell out why. Moreover, not only do the lines of argument fail in their own terms: in combination, they turn out to be antagonistic to the very position that Harris wants to defend. While it is not my intention here to deny that there might be a duty to research, I claim that Harris' argument for the existence of such a duty is not the best way to establish it.

Hidalgo's paper is a clear and powerful contribution to a topic of ongoing concern.1 It should be taken seriously by anyone who worries that there is something seriously wrong with the flow of medical expertise from the poor countries of the South to the rich countries of the North because it forces open the question of just what that wrongness is supposed to be. Being unable to identify the moral problem about migration will not make the problem about poor health in the South go away, of course: and it might be that, if we are genuinely concerned to keep expertise in the South, we simply have to face up to the possibility of subsidising the wages …

In debates about human cloning, a distinction is frequently drawn between therapeutic and reproductive uses of the technology. Naturally enough, this distinction influences the way that the law is framed. The general consensus is that therapeutic cloning is less morally problematic than reproductive cloning — one can hold this position while holding that both are morally unacceptable — and the law frequently leaves the way open for some cloning for the sake of research into new therapeutic techniques while banning it for reproductive purposes. We claim that the position adopted by the law has things the wrong way around: if we accept a moral distinction between therapeutic and reproductive cloning, there are actually more reasons to be morally worried about therapeutic cloning than about reproductive cloning. If cloning is the proper object of legal scrutiny, then, we ought to make sure that we are scrutinising the right kind of clone.

A company called Biojewellery has proposed to take a sample of bone tissue from a couple and to grow this sample into wedding rings. One of the ethical problems that such a proposal faces is that it implies surgery without medical need. To this end, only couples with a prior need for surgery are being considered. This paper examines the question of whether such a stipulation is necessary. It is suggested that, though medical need and the provision of health and wellbeing is overwhelmingly the warrant for surgical intervention, there is no reason in principle why other, non-medical, projects such as jewellery creation might not also warrant surgical intervention. Implicitly, this line of thought forces us to consider the proper place of surgical intervention—that is, to ask what surgeons are for