Recent highly publicized privacy breaches in health care and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This paper focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how (...) it might be mitigated, and what precisely is at stake in pervasive data sharing. However, there has been little discussion of whether and how to communicate the risk to potential donors. We review the ethical arguments behind favoring different types of risk communication in the consent process, and outline how identifiability concerns can be incorporated into either a detailed or simplified method of communicating risks during the consent process. (shrink)

T. J. Smiley; XII.—Entailment and Deducibility, Proceedings of the Aristotelian Society, Volume 59, Issue 1, 1 June 1959, Pages 233–254, https://doi.org/10.1093.

Background Biobank participants often do not understand much of the information they are provided as part of the informed consent process, despite numerous attempts at simplifying consent forms and improving their readability. We report the first assessment of biobank enrollees’ comprehension under an "integrated consent” process, where patients were asked to enroll in a research biobank as part of their normal healthcare experience. A number of healthcare systems have implemented similar integrated consent processes for biobanking, but it is unknown how (...) much patients understand after enrolling under these conditions. Methods: We recruited patients who enrolled in a biobank while in a healthcare setting when receiving ordinary care. We assessed knowledge of consent materials using 11 true/false questions drawn from a well-known biobank knowledge test. After reviewing the results from 114 participants, we revised the consent form and repeated the knowledge assessment with 144 different participants. Results: Participants scored poorly on the knowledge test in both rounds, with no significant differences in overall scores or individual items between the rounds. In Phase 1, participants answered 53% of the questions correctly, 25% incorrectly, and 22% “I don’t know.” In Phase 2, participants answered 53% of questions correctly, 24% incorrectly, and 23% “I don’t know.” Participants scored particularly poorly on questions about data sharing and accessing medical records. Conclusions: Enrollees under an integrated consent model had significant misunderstandings that persisted despite an attempt to improve information specifically about those topics in a consent form. These results raise challenges for current approaches that attribute misunderstanding to overly complex consent forms. They also suggest that the pressures of the clinic may compound other problems with patient understanding of biobank consent. As health systems increasingly blend research and care, they may need to rethink their approach to educating patients about participation in a biobank. (shrink)

Sometimes ordinary disagreements become deep as a result of epistemic injustice. The paper explores a hitherto unnoticed connection between two phenomena that have received ample attention in recent social epistemology: deep disagreement and epistemic injustice. When epistemic injustice comes into play in a regular disagreement, this can lead to higher-order disagreement about what counts as evidence concerning the original disagreement, which deepens the disagreement. After considering a common definition of deep disagreement, it is proposed that the depth of disagreements is (...) best understood as a matter of degree. Then, a case study of real-life disagreement is introduced: the disagreement about whether racism is a significant issue in the Netherlands, illustrated by the tradition of ‘Black Pete’. It is argued that there is disagreement about what counts as evidence in the case study because of two forms of epistemic injustice: testimonial and hermeneutical injustice. Specifically, there is disagreement about epistemic principles concerning whether private first-personal experience of racism is a weighty source of evidence in this domain, whether victims of racism count as important testifiers in this domain, and how to assess testimony that is not intelligible to you because it employs concepts and terminology you are unfamiliar with. By dismissing the relevant testimony and epistemic resources, the disagreement boils down to disagreement on the level of epistemic principles concerning,, and. Introducinginjustice-based deep disagreementhighlights moral and political aspects of disagreements that might seem factual. (shrink)

Amongst other countries, the Netherlands currently allows euthanasia, provided the physician performing the procedure adheres to a strict set of requirements. In 2016, Second Chamber member Pia Dijkstra submitted a law proposal which would also allow euthanasia without the reason necessarily having any medical foundation; euthanasia on the basis of a completed life. The debate on this topic has been ongoing for over two decades, but this law proposal has made the discussion much more immediate and concrete. This paper considers (...) the moral permissibility of Pia Dijkstra’s law proposal, focusing on the ethics of the implementation Dijkstra describes in her proposal. I argue that, at present, Dijkstra’s law proposal is unsuitable for implementation, due to a number of as of yet unaddressed problems, including the possible development of an ageist stigma and undue pressure on the profession of end-of-life coordinator. Perhaps adequate responses can be conceived to address these issues. However, the existence of a radically different, yet currently equally unacceptable position regarding the implementation of euthanasia for a completed life as proposed by fellow party member Paul Schnabel suggests it may be difficult to formulate an ethically acceptable implementation for this, in principle, ethically acceptable concept. (shrink)

Some philosophers have thought that life could only be meaningful if there is no God. For Sartre and Nagel, for example, a God of the traditional classical theistic sort would constrain our powers of self-creative autonomy in ways that would severely detract from the meaning of our lives, possibly even evacuate our lives of all meaning. Some philosophers, by contrast, have thought that life could only be meaningful if there is a God. God and the Meanings of Life is interested (...) in exploring the truth in both these schools of thought, seeking to discover what God could and couldn't do to make life meaningful (as well as what he would and wouldn't do). Mawson espouses a version of the 'amalgam' or 'pluralism' thesis about the issue of life's meaning – in essence, that there are a number of different legitimate meanings of 'meaning' (and indeed 'life') in the question of life's meaning. According to Mawson, God, were he to exist, would help make life meaningful in some of these senses and hinder in some others. He argues that whilst there could be meaning in a Godless universe, there could be other sorts of meaning in a Godly one and that these would be deeper. (shrink)

Genetic information is widely thought to pose unique risks of reidentifying individuals. Genetic data reveals a great deal about who we are and, the standard view holds, should consequently be treated differently from other types of data. Contrary to this view, we argue that the dangers of reidentification for genetic and nongenetic data—including health, financial, and consumer information—are more similar than has been recognized. Before different requirements are imposed around sharing genetic information, proponents of the standard view must show that (...) they are in fact necessary. We further argue that the similarities between genetic and nongenetic information have important implications for communicating risks during consent for health care and research. While patients and research participants need to be more aware of pervasive data‐sharing practices, consent forms are the wrong place to provide this education. Instead, health systems should engage with patients throughout patient care to educate them about data‐sharing practices. (shrink)

Most philosophers and psychologists who have explored the psychology of climate change have focused only on motivational issues—getting people to act on what morality requires of them. This is misleading, however, because there are other psychological processes directed not at motivation but rather our ability to grasp the implications of climate change in a general way—what Stephen Gardiner has called the ‘grasping problem’. Taking the grasping problem as my departure point, I draw two conclusions from the relevant psychological literature: 1) (...) ethicists and policy makers should focus less on changing individuals’ behaviors and more on changing policy; and 2) even though solutions to climate change must come at the level of policy, progress on this front will be limited by incompatible moral norms. (shrink)

Beskow and Weinfurt (2019) present an excellent and timely discussion of how to respond to evidence that individuals do not fully understand a biobank consent form. We faced similar challenges afte...

How do we think about animals? How do we decide what they deserve and how we ought to treat them? Subhuman takes an interdisciplinary approach to these questions, drawing from research in philosophy, neuroscience, psychology, law, history, sociology, economics, and anthropology. Subhuman argues that our attitudes to nonhuman animals, both positive and negative, largely arise from our need to compare ourselves to them.

The title of T. J. Mawson's article was incorrectly given as “God's creation of mortality” on the Contents page and cover. The publishers would like to apologise to the author and their readers for this error.

Jesse Prinz and Shaun Nichols have argued that within metaethics, sentimentalism is the theory that best accords with empirical facts about human moral psychology. Recent findings in experimental moral psychology, they argue, indicate that emotions are psychologically central to our moral concepts. One way of testing the empirical adequacy of sentimentalism is by looking at research on environmental values. A classic problem in environmental ethics is providing an account of the intrinsic value of nonhuman entities, which is often thought to (...) be inconsistent with sentimentalism. However, no supporters of sentimentalist accounts of environmental values have evaluated the empirical adequacy of their claims. The relevant evidence falls under two broad categories: responses to nature itself and moral evaluations of environmental behaviors. The evidence indicates that both valuing and disvaluing nature are ultimately grounded in emotions. (shrink)

This paper argues that the Food and Drug Administration’s (FDA) policy for health and wellness apps is ethically problematic. Currently, the FDA does not regulate health and wellness apps that are not intended for medical use. As a result of this hands‐off policy, preventing harm to consumers is left primarily to developers and app marketplaces. We argue that the FDA’s duties to prevent harm and maintain accountability to the American public require that they play a much stronger role. We also (...) discuss concerns about efficiency and fostering innovation, and argue that while they should help shape FDA regulation of health and wellness apps, they do not justify complete absence of FDA involvement. -/- . (shrink)