Some have objected to human enhancement on the grounds that it violates the autonomy of the enhanced. These objections, however, overlook the interesting possibility that autonomy itself could be enhanced. How, exactly, to enhance autonomy is a difficult problem due to the numerous and diverse accounts of autonomy in the literature. Existing accounts of autonomy enhancement rely on narrow and controversial conceptions of autonomy. However, we identify one feature of autonomy common to many mainstream accounts: reasoning ability. Autonomy can then (...) be enhanced by improving people’s reasoning ability, in particular through cognitive enhancement; given how valuable autonomy is usually taken to be, this gives us extra reason to pursue such cognitive enhancements. Moreover, autonomy-based objections will be especially weak against such enhancements. As we will argue, those who are worried that enhancements will inhibit people’s autonomy should actually embrace those enhancements that will improve autonomy. (shrink)

The prospect of consumable meat produced in a laboratory setting without the need to raise and slaughter animals is both realistic and exciting. Not only could such in vitro meat become popular due to potential cost savings, but it also avoids many of the ethical and environmental problems with traditional meat productions. However, as with any new technology, in vitro meat is likely to face some detractors. We examine in detail three potential objections: 1) in vitro meat is disrespectful, either (...) to nature or to animals; 2) it will reduce the number of happy animals in the world; and 3) it will open the door to cannibalism. While each objection has some attraction, we ultimately find that all can be overcome. The upshot is that in vitro meat production is generally permissible and, especially for ethical vegetarians, worth promoting. (shrink)

With the world grappling with continued spread of monkeypox internationally, vaccines play a crucial role in mitigating the harms from infection and preventing spread. However, countries with the greatest need - particularly historically endemic countries with the highest monkeypox case-fatality rates - are not able to acquire scarce vaccines. This is unjust, and requires rectification through equitable allocation of vaccines globally. We propose applying the Fair Priority Model for such allocation, which emphasizes three key principles: 1) preventing harm; 2) prioritizing (...) the disadvantaged; and 3) treating people with equal moral concern. Post-exposure prophylaxis (PEPV) has the most potential to mitigate harm, and so ensuring countries have sufficient supply for PEPV should be the first priority. And historically endemic countries, which face disadvantages that compound potential harms from monkeypox, should be the first recipients of such vaccines. Once sufficient supply is allocated for countries to apply PEPV, global allocation could move on to pre-exposure prophylaxis (PrEP), again prioritizing historically endemic countries first before distribution to the rest of the global community, based on projected number of cases and vulnerability to harm. (shrink)

Experiences of discrimination such as everyday racism can negatively affect the mental and physical health of children and adolescents with an immigrant background and impair their integration process in the host societies. Although experiences of racism are part of the everyday life of many minors affected by the process of “Othering”, an overview of empirical findings is missing for this age group worldwide. A systematic review was conducted to identify and analyze international research on the impact of discrimination on the (...) developmental outcomes and integration of immigrant children and adolescents. Three scientific databases were systematically searched up to June 11, 2021. A total of k = 4,769 identified publications were reviewed based on inclusion and exclusion criteria in terms of the PICOS format by independent reviewers. Thirty-four primary studies published between 1998 and 2021 met all inclusion criteria. The samples examined were mainly migrant youth, with only k = 2 studies assessing refugee youth and k = 1 study assessing both migrant and refugee youth. The majority of included studies assessed perceived discrimination, with only k = 1 study directly assessing experiences of racism. The association between discrimination or racism and developmental outcomes was assessed by the included studies within the three main topics of mental and physical health-related outcomes, school-related outcomes, and other developmental outcomes. Data collection procedures were implemented, and findings on minors’ developmental outcomes and integration process who experience discrimination and racism were summarized and discussed. The current review suggests experienced discrimination as a negative predictor of children and adolescents’ health-related outcomes, while no clear results could be found for the association between discrimination and school-related outcomes. A need for more empirical research focusing on the path and indirect link between discrimination and children and adolescents’ school-related outcomes as well as resulting school recommendations and the chosen career path was derived.Systematic Review Registration[https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=260291], identifier [CRD42021260291]. (shrink)

This paper critically assesses the “procedural” accounts of political justice set forth by John Rawls in A Theory of Justice (1971) and Robert Nozick in Anarchy, State, and Utopia (1974). I argue that the areas of agreement between Rawls and Nozick are more significant than their disagreements. Even though Nozick offers trenchant criticisms of Rawls's argument for economic redistribution (the “difference principle”), Nozick's own economic libertarianism is undermined by his “principle of rectification,” which he offers as a possible ground in (...) practice for the application of something like the difference principle. Both Rawls's and Nozick's accounts of justice fail because of their abstraction from human nature as a ground of right. At the same time the libertarianism on which they agree in the non-economic sphere would deprive a free society of its necessary moral underpinning. Rawls and Nozick err, finally, by demanding that the policies pursued by a just society conform to theoretical formulas concocted by philosophy professors, rather than leaving room (as Lockean liberalism does) for the adjustment of policies to particular circumstances based on statesmen's prudential judgment and the consent of the governed. Particularly troubling from the perspective of a citizen seriously concerned with the advancement of justice and freedom is both thinkers' shrill denunciations of existing liberal societies for failing to conform to their particular strictures. (shrink)

“I quite rightly pass for an atheist,” Jacques Derrida announces in Circumfession. Grace Jantzen's suggestion that the poststructuralist critique of modernity can also be trained on atheism helps us make sense of this playfully cryptic statement: although Derrida sympathizes with the “idea” of atheism, he is wary of the modern brand of atheism, with its insistence on rationally arranging—straightening out—religion. In this paper, I will argue that poststructural feminism, with its focus on embodied epistemology, offers a way to re-explain Derrida's (...) “I rightly pass,” and also to carry it forward. Poststructural feminist atheism leads us through Derrida to an embodied disbelief drawing on three dimensions of poststructural feminism: feminist epistemology and material feminism, relationality, and affect theory. (shrink)

At the end of his attack on my use of the psychoanalytic model for the interpretation of literature, Heller raises the question concerning what the task of the literary critic is or ought to be. His own "sketch of the Kleistean theme's historical ancestry and its later development," he says, seeks to deepen and enrich the reader's appreciation of Kleist's literary art, the artistry of his phrasing, the persuasiveness of his incidents, the conclusiveness of his examples." By implication he suggests (...) that my method does not have this end—that is, appreciation—for its goal. In this he is partially right. "Appreciation" in Heller's sense is not as directly a goal for me. But does Heller's method of intellectual history and literary relation meet his own criteria of deepening and enriching the reader's appreciation of Kleist? In his capsule treatment of Great Thinkers of the Western World from Plato to Marx, we learn that many writers besides Kleist treated Kleist's theme of man's fall from unconscious grace. What exactly does this tell us about Kleist's treatment of it? How does it deepen the reader's appreciation of Kleist's literary art, the artistry of his phrasing, the persuasiveness of his incidents? It doesn't. It isn't even about Kleist. Although Heller tells us that it is the "thought" and "imagery" which "make for the great distinction of the essay" , his evidence for this consists, in the case of the former, in his tracing the history of the essay's thought and, in the case of the latter, in his statements that Kleist's use of the puppet as the exemplar of the unselfconscious graceful being is "unusual" and "novel" and that his bear story, though it may lack "in immediate plausibility," "gains in making Kleist's point" and is "a memorable exemplar" of the "art of grotesque inventions that are capable of floating for quite a while above and between the comic and the serious before landing with scintillating effect in one domain or the other" . Margret Schaefer is a lecturer in the department of psychiatry at Northwestern University Medical School. She responds here to Erich Heller's "The Dismantling of a Marionette Theater; or, Psychology and the Misinterpretation of Literature" , in which he discussed her article, "Kleist's 'About the Puppet Theater,". (shrink)

Membranous organelles allow sub‐compartmentalization of biological processes. However, additional subcellular structures create dynamic reaction spaces without the need for membranes. Such membrane‐less organelles (MLOs) are physiologically relevant and impact development, gene expression regulation, and cellular stress responses. The phenomenon resulting in the formation of MLOs is called liquid–liquid phase separation (LLPS), and is primarily governed by the interactions of multi‐domain proteins or proteins harboring intrinsically disordered regions as well as RNA‐binding domains. Although the presence of RNAs affects the formation and (...) dissolution of MLOs, it remains unclear how the properties of RNAs exactly contribute to these effects. Here, the authors review this emerging field, and explore how particular RNA properties can affect LLPS and the behavior of MLOs. It is suggested that post‐transcriptional RNA modification systems could be contributors for dynamically modulating the assembly and dissolution of MLOs. (shrink)

This chapter highlights the impact of the work of French phenomenologist Michel Henry and Austrian psychoanalyst Otto Rank on psychoanalysis. I contend that Henry and Rank clarify the nature and role of mindfulness and creativity in psychoanalysis. To begin, I draw out the implications of Henry’s critique of Freudian psychoanalysis. In my view, Henry’s work reveals and untangles basic inconsistencies in Freud’s views on the unconscious, affective layer of the subject’s life, and establishes that the creativity of life’s immanent movement (...) is essential to the development of the subject’s personality and to the acquisition and alleviation of neuroses. At the same time, I maintain that, while Henry’s work acknowledges a potential role for mindfulness in the development of life’s creativity, his account is problematic. At the end of the day, Henry’s conception of life as an immanent, self-enclosed reality fails to adequately account for the relation between life (creativity) and intentionality (mindfulness). As a result, it fails to sufficiently account for the intersubjective character of creativity and mindfulness. To address these issues, I bring Henry’s insights into these matters into dialogue with Rank’s psychology of difference, which similarly regards affectivity and creativity as central to human life and to psychoanalysis. By doing so, what comes forward is that mindfulness and creativity are relationships that can strengthen and weaken one another, and which always involve self-enclosure and openness towards others and the cosmos. Bearing this in mind, I maintain that mindfulness and creativity can play an important role in allowing psychoanalysis to realize its aim of improving the well-being of human beings. (shrink)

Michael Hauskeller (“Reflections from a Troubled Stream: Giubliani and Minerva on ‘After-Birth Abortion’) has recently suggested that we should resist rationalist tendencies in moral discourse: “[I]s not all morality ultimately irrational? Even the most strongly held moral convictions can be shown to lack a rational basis.” (Hauskeller 2012, p. 18) Hauskeller was responding to Alberto Giubliani and Francesca Minverva’s (2012) recent defense of the permissibility of killing infants, but his anti-rationality arguments have wide-reaching implications. Yet pace Hauskeller, rationality is indeed (...) of crucial importance to any ethical argument. We should not abandon rationality for the sake of refuting one discomforting hypothesis; instead, rationality must be rigorously employed, here and elsewhere, in the search for the truth. (shrink)

Like all research, embryo research can take a variety of forms, some posing substantially more risks to persons than others. Savulescu et al argue persuasively that regulatory regimes specially designed for sensitive embryo research should differentiate between person-affecting and non-person-affecting embryo research, with substantial scrutiny only warranted for the former.1 Yet if we find Savulescu et al ’s argument persuasive, what practical implications would it have? In this commentary, we focus in particular on how such an argument might apply in (...) Singapore, one of the jurisdictions with special regulations for embryo research. We will summarise the way in which approval for oocyte and embryonic research operates in Singapore, and suggest that Savulesc et al ’s distinction requires specification to be useful in such contexts. We propose adopting a risk-stratified framework similar to that employed with Institutional Review Boards. This requires a wider view of risks than the focus by Savulescu et al on future persons. We then illustrate how such a framework would apply in five scenarios discussed in Savulescu et al. Research with embryos and oocytes is regulated in Singapore under the Human Biomedical Research Act.2 Enacted in 2015, this law sets out requirements for consent, IRB review and research oversight. By definition, all research involving gametes and embryos fall within the remit of the Act. Moreover, such research is defined as ‘restricted’; besides the Act, research involving oocytes and embryos is also subject to control under the Human Biomedical Research …. (shrink)

The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional (...) Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency. (shrink)

Using emotional film clips is one of the most popular and effective methods of emotion elicitation. The main goal of the present study was to develop and test the effectiveness of a new and comprehensive set of emotional film excerpts. Fifty film experts were asked to remember specific film scenes that elicited fear, anger, sadness, disgust, amusement, tenderness, as well as emotionally neutral scenes. For each emotion, the 10 most frequently mentioned scenes were selected and cut into film clips. Next, (...) 364 participants viewed the film clips in individual laboratory sessions and rated each film on multiple dimensions. Results showed that the film clips were effective with regard to several criteria such as emotional discreteness, arousal, positive and negative affect. Finally, ranking scores were computed for 24 classification criteria: Subjective arousal, positive and negative affect (derived from the PANAS; Watson & Tellegen, 1988), a positive and a negative affect scores derived from the Differential Emotions Scale (DES; Izard et al., 1974), six emotional discreteness scores (for anger, disgust, sadness, fear, amusement and tenderness), and 15 “mixed feelings” scores assessing the effectiveness of each film excerpt to produce blends of specific emotions. In addition, a number of emotionally neutral film clips were also validated. The database and editing instructions to construct the film clips have been made freely available in a website. (shrink)

This article explores Franz Brentano's opposition to papal infallibility, and sets this in the context of his development as a Catholic scholar. An active participant in the Catholic revival of the nineteenth century, Brentano contributed to the emergence of neoscholasticism through his philosophical rehabilitation of Aristotle. Brentano ultimately left the Church however as the result of intensive scrutiny of his faith occasioned by his analysis of infallibility. This article explores this crisis of faith by analyzing, for the first time, Brentano's (...) position on papal infallibility, and suggesting ways that it informed his philosophical development. (shrink)

Through a glass darkly / Joshua Mitchell -- Skepticism, self, and toleration in Montaigne's political thought / Alan Levine -- French free-thinkers in the first decades of the Edict of Nantes / Maryanne Cline Horowitz -- Descartes and the question of toleration / Michael Gillepsie -- Toleration and the skepticism of religion in Spinoza's Tractatus Theologico-Politicus / Steven B. Smith -- Monopolizing faith / Alan Houston -- Skepticism and toleration in Hobbes' political thought / Shirley Letwin -- John Locke and (...) the foundations of toleration / Nathan Tarcov -- Pierre Bayle's atheist politics / Kenneth R. Weinstein -- Of believers and barbarians / Diana Schaub -- Tolerant skepticism of Voltaire and Diderot / Patrick Riley. (shrink)

Both experimental and ethnographic studies show that reciprocal exchanges (in which actors unilaterally provide benefits to each other without formal agreements) produce stronger trust than negotiated exchanges secured by binding agreements. We develop the theoretical role of risk and uncertainty as causal mechanisms that potentially explain these results, and then test their effects in two laboratory experiments that vary risk and uncertainty within negotiated and reciprocal forms of exchange. We increase risk in negotiated exchanges by making agreements nonbinding and decrease (...) uncertainty in reciprocal exchanges by having actors communicate their intentions. Our findings support three main theoretical conclusions. (1) Increasing risk in negotiated exchange produces levels of trust comparable to those in reciprocal exchange only if the partner's trustworthiness is near-absolute. (2) Decreasing uncertainty in reciprocal exchange either increases or decreases trust, depending on network structure. (3) Even when reciprocal and negotiated exchanges produce comparable levels of trust, their trust differs in kind, with reciprocal exchange partners developing trust that is more resilient and affect-based. (shrink)

This paper explores the ways that Daniel C. Dennett’s bestselling 2006 book Breaking the Spell traffics in a set of distinctly American presumptions about the relationship between religion and science. In this Americanized atheism, religion is presumed to be a set of logically organized propositional beliefs–a misbegotten science in need of correction or elimination. I show that a convergent critique, drawing on both evolutionary theory and deconstruction, highlights the limitations of this approach. This convergence highlights the theme of accident in (...) both pluralist evolutionary biology and continental philosophy of religion. Thematizing accident opens up a new conversational space between a deconstructive approach to religion and postadaptationist evolutionary theory, with implications not only for a philosophical understanding of religion, but for new, postsecular atheisms. (shrink)

Moral enhancement is an ostensibly laudable project. Who wouldn’t want people to become more moral? Still, the project’s approach is crucial. We can distinguish between two approaches for moral enhancement: direct and indirect. Direct moral enhancements aim at bringing about particular ideas, motives or behaviors. Indirect moral enhancements, by contrast, aim at making people more reliably produce the morally correct ideas, motives or behaviors without committing to the content of those ideas, motives and/or actions. I will argue, on Millian grounds, (...) that the value of disagreement puts serious pressure on proposals for relatively widespread direct moral enhancement. A more acceptable path would be to focus instead on indirect moral enhancements while staying neutral, for the most part, on a wide range of substantive moral claims. I will outline what such indirect moral enhancement might look like, and why we should expect it to lead to general moral improvement. (shrink)

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. (shrink)

This paper argues that one problem that besets black-box AI is that it lacks algorithmic justifiability. We argue that the norm of shared decision making in medical care presupposes that treatment decisions ought to be justifiable to the patient. Medical decisions are justifiable to the patient only if they are compatible with the patient’s values and preferences and the patient is able to see that this is so. Patient-directed justifiability is threatened by black-box AIs because the lack of rationale provided (...) for the decision makes it difficult for patients to ascertain whether there is adequate fit between the decision and the patient’s values. This paper argues that achieving algorithmic transparency does not help patients bridge the gap between their medical decisions and values. We introduce a hypothetical model we call Justifiable AI to illustrate this argument. Justifiable AI aims at modelling normative and evaluative considerations in an explicit way so as to provide a stepping stone for patient and physician to jointly decide on a course of treatment. If our argument succeeds, we should prefer these justifiable models over alternatives if the former are available and aim to develop said models if not. (shrink)

For people to contribute to discourse, they must do more than utter the right sentence at the right time. The basic requirement is that they add to their common ground in an orderly way. To do this, we argue, they try to establish for each utterance the mutual belief that the addressees have understood what the speaker meant well enough for current purposes. This is accomplished by the collective actions of the current contributor and his or her partners, and these (...) result in units of conversation called contributions. We present a model of contributions and show how it accounts for a variety of features of everyday conversations. (shrink)

The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when research is judged to be of (...) particular value. However, several different terms are used to refer to this value, indicating a lack of conceptual clarity regarding the appropriate test for access to health data for research without consent. In this paper we do three things. First we describe the current confusion and instability in terminology relating to public interest in the context of consent waivers. Second we argue for harmonisation of terminology on the grounds of clarity, transparency and consistency. Third we argue that the term ‘public interest’ best reflects the normative work required to justify consent waivers because it is the broadest of the competing terms. ‘Public interest’ contains within its scope positive and negative implications of a study, as well as welfare, justice and rights considerations. In making this argument, we explain the normative basis for consent waivers, and provide a starting place for further discussion about the precise conditions in which a given study can be said to advance the public interest. Ipsos MORI study found that: … the public would be broadly happy with administrative data linking for research projects provided Those projects have social value, broadly defined. Data are de-identified. Data are kept secure. Businesses are not able to access the data for profit. (shrink)

The current prevailing view is that participation in biomedical research is above and beyond the call of duty. While some commentators have offered reasons against this, we propose a novel public goods argument for an obligation to participate in biomedical research. Biomedical knowledge is a public good, available to any individual even if that individual does not contribute to it. Participation in research is a critical way to support an important public good. Consequently, all have a duty to participate. The (...) current social norm is that individuals participate only if they have a good reason to do so. The public goods argument implies that individuals should participate unless they have a good reason not to. Such a shift would be of great aid to the progress of biomedical research, eventually making society significantly healthier and longer lived. (shrink)

The COVID-19 pandemic revealed numerous weaknesses in pandemic preparedness and response, including underfunding, inadequate surveillance, and inequitable distribution of countermeasures. To overcome these weaknesses for future pandemics, WHO released a zero draft of a pandemic treaty in February, 2023, and subsequently a revised bureau's text in May, 2023. COVID-19 made clear that pandemic prevention, preparedness, and response reflect choices and value judgements. These decisions are therefore not a purely scientific or technical exercise, but are fundamentally grounded in ethics. The latest (...) treaty draft reflects these ethical considerations by including a section entitled Guiding Principles and Approaches. Most of these principles are ethical—they establish core values that undergird the treaty. Unfortunately, the treaty draft's set of principles are numerous, overlapping, and show inadequate coherence and consistency. We propose two improvements to this section of the draft pandemic treaty. First, key guiding ethical principles should be clearer and more precise than they currently are. Second, the link between ethical principles and policy implementation should be clearly established and define boundaries on acceptable interpretation, ensuring that signatories abide by these principles. (shrink)

While philosophers are often concerned with the conditions for moral knowledge or justification, in practice something arguably less demanding is just as, if not more, important – reliably making correct moral judgments. Judges and juries should hand down fair sentences, government officials should decide on just laws, members of ethics committees should make sound recommendations, and so on. We want such agents, more often than not and as often as possible, to make the right decisions. The purpose of this paper (...) is to propose a method of enhancing the moral reliability of such agents. In particular, we advocate for a procedural approach; certain internal processes generally contribute to people’s moral reliability. Building on the early work of Rawls, we identify several particular factors related to moral reasoning that are specific enough to be the target of practical intervention: logical competence, conceptual understanding, empirical competence, openness, empathy and bias. Improving on these processes can in turn make people more morally reliable in a variety of contexts and has implications for recent debates over moral enhancement. (shrink)

It has recently been argued that reproductive genetic manipulation technologies like mitochondrial replacement and germline CRISPR modifications cannot be said to save anyone’s life because, counterfactually, no one would suffer more or die sooner absent the intervention. The present article argues that, on the contrary, reproductive genetic manipulations may be life-saving (and, from this, have therapeutic value) under an appropriate population health perspective. As such, popular reports of reproductive genetic manipulations potentially saving lives or preventing disease are not necessarily mistaken, (...) though such terminology still requires further empirical validation. (shrink)

The COVID-19 pandemic has both exposed and created deep rifts in society. It has thrust us into deep ethical thinking to help justify the difficult decisions many will be called upon to make and to protect from decisions that lack ethical underpinnings. This paper aims to highlight ethical issues in six different areas of life highlighting the enormity of the task we are faced with globally. In the context of COVID-19, we consider health inequity, dilemmas in triage and allocation of (...) scarce resources, ethical issues associated with research, ethical considerations relating to tracing apps, and exit strategies such as immunity passports and COVID-19 vaccines. Finally, we consider environmental issues in light of COVID-19. The paper also offers some ethical reflection on these areas as many parts of the world contemplate the recovery phase. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to (...) the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

The right to withdraw from participation in research is recognized in virtually all national and international guidelines for research on human subjects. It is therefore surprising that there has been little justification for that right in the literature. We argue that the right to withdraw should protect research participants from information imbalance, inability to hedge, inherent uncertainty, and untoward bodily invasion, and it serves to bolster public trust in the research enterprise. Although this argument is not radical, it provides a (...) useful way to determine how the right should be applied in various cases. (shrink)