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 (SHAPES) 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, AIassisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data.
There is room for further work on how protocols requiring that data be publicized might be enforced; should it be statutory, or non-statutory? Who should decide what should be made public? There is also room for work on what it is necessary to share, and on whether and how IP law should be reformed.
John Harris suggests that partcipation in or support 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.
Background: Euthanasia 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 text: At 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 lifesustaining 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 conclusion: James Rachels's work on active and passive euthanasia has been immensely influential; but this is an influence that we ought to resist.
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.
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