Background: Individual, comprehensive, and written informed consent is broadly considered an ethical obligation in research involving the sampling of human material. In developing countries, however, local conditions, such as widespread illiteracy, low levels of education, and hierarchical social structures, complicate compliance with these standards. As a result, researchers may modify the consent process to secure participation. To evaluate the ethical status of such modified consent strategies it is necessary to assess the extent to which local practices accord with the values (...) underlying informed consent. Methods: Over a 2-week period in April 2014 we conducted semistructured interviews with researchers from a genetic research institute in rural Pakistan and families who had given blood samples for their research. Interviews with researchers focused on the institute’s requirements for consent, and the researchers’ strategies for and experiences with obtaining consent in the field. Interviews with donors focused on their motivation for donating samples, their experience of consent and donation, and what factors were central in their decisions to give consent. Results: Researchers often reported modifications to consent procedures suited to the local context, standardly employing oral and elder consent, and tailoring information to the social education level of donor families. Central themes in donors’ accounts of their decision to consent were the hope of getting something out of their participation and their remarkably high levels of trust in the researchers. Several donor accounts indicated a degree of confusion about participation and diagnosis, resulting in misconceived expectations of therapeutic benefits. Conclusions: We argue that while building and maintaining trusting relationships in research is important—not least in developing countries—strategies that serve this endeavor should be supplemented with efforts to ensure proper provision and understanding of relevant information, specifically about the nature of research and measures for individual consent and opt-out. (shrink)

Some say that consent is essentially just a state of mind. Others say it is essentially just a communication. Many say it is both. I say it is neither. Instead it is an act, or rather a pair of acts—an internal mental act in the first instance, an external performative act in the second. Each of those acts is an act of commitment, intrapersonally in the first case and interpersonally in the second. The content of the commitment is, familiarly enough, (...) to give permission to someone else to do something that it would be wrong for them to do without your permission. The novelty lies in seeing consent as an act of commitment in those two dimensions and in seeing those as commitments that persist until and unless undone by an act of a similar sort. (shrink)

The nub of the following argument is that there is a conflict between the idea of (liberal) neutrality on the one hand, and an intuitively plausible idea of political representation on the other. The conflict arises when neutrality is seen as a condition for political legitimacy: neutralist political representation is only legitimate insofar as the representative does not advance political ideas based on conceptions of the good that are not endorsed by the whole of the (reasonable) polity. However, we often (...) encounter examples of political representation that do not live up to this demand but nevertheless seem legitimate. Hence, neutralists should explain either why this counterintuitive notion of representation does not follow from neutrality or explain what representatives are meant and allowed to do in such a political arrangement. A plausible neutralist rejoinder to this is to say that legitimacy is not dependent on neutrality for all political decisions. Neutrality is important (only or predominantly) regarding a certain body of political decisions, viz., using the Rawlsian idiom, 'constitutional essentials and matters of basic justice.' However, such a two-levelled approach is not without its problems. I argue that a skein of theoretical and practical challenges to the two-levelled approach undermines, or at least weakens, this attempt to solve the problem about representation and neutrality, and that the two-levelled approach is unclear in certain key aspects. The aim of the article is, however, quite modest. It is not to challenge neutrality per se ; rather, it is a call for further clarification of the issues pertaining to the relationship between neutrality and representation. (shrink)

It is commonly thought that exploitation is unjust; some think it is part of the very meaning of the word 'exploitation' that it is unjust. Those who think this will suppose that the just society has to be one in which people do not exploit one another, at least on a large scale. I will argue that exploitation is not unjust by definition, and that a society (such as Our own) might be fundamentally just while nevertheless being pervasively exploitative. I (...) do think that exploitation is nearly always a bad thing, and will try to identify the moral belief which makes most of us think it is. But I will argue that its badness does not always consist in its being unjust. (shrink)

Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents, healthcare professionals and policy decision makers in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information (...) attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities ; parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs. (shrink)

Though much has been written about when paternalistic intervention is justified, and about how it is justified, much less has been written about who may do the intervening. This is a substantial lacuna in our understanding of the nature of justified paternalism. By examining the question of who it is that may most appropriately interfere with the course of our decision-making, we can learn something useful both about paternalism and about the nature of friendship.In this essay I will argue that (...) friendship and paternalistic intervention are linked. Friendship of the close, intimate variety that I will be discussing is in part constituted by the fact that one friend is morally justified in interfering with the other’s decisions. Intimate friendship involves a partial meshing of identities. This meshing of identities manifests itself in part by the liberties that one friend takes in guiding the life of the other. Paternalistic intervention between friends can thus be justified because it expresses the union of the friends, and because it preserves that union. (shrink)

Rapid advances in neuroscience may enable us to identify the neural correlates of ordinary decision making. Such knowledge opens up the possibility of acquiring highly accurate information about people’s competence to consent to medical procedures and to participate in medical research. Currently we are unable to determine competence to consent with accuracy and we make a number of unrealistic practical assumptions to deal with our ignorance. Here I argue that if we are able to detect competence to consent and if (...) we are able to develop a reliable neural test of competence to consent, then these assumptions will have to be rejected. I also consider and reject three lines of argument that might be developed by a defender of the status quo in order to protect our current practices regarding judgments of competence in the face of the availability of information about the neural correlates of ordinary human decision making. (shrink)

ABSTRACTThis paper begins with the assumption that it is morally problematic when people in need are offered money in exchange for research participation if the amount offered is unfair. Such offers are called ‘coercive’, and the degree of coerciveness is determined by the offer's potential to cause exploitation and its irresistibility. Depending on what view we take on the possibility to compensate for the sacrifices made by research participants, a wish to avoid ‘coercive offers’ leads to policy recommendations concerning payment (...) for participation. For sacrifices considered compensable, we ought to offer either no payment or payment at a level deemed fair, while for sacrifices deemed incompensable, we always ought to offer no payment because as compensation appears and increases, so too does coercion. This article provides a model for thinking of the way in which degrees of exploitativeness, irresistibility, and coerciveness interact with the size of the reward for compensable and incompensable cases. T... (shrink)

Consider the following examples of behavior by Smith: 1. Smith, seated at her restaurant table, gives an order to the waiter; 2. Smith gets into a cab and names a destination; 3. Smith agrees to Jones's suggestion that they go back to Jones's apartment for a few drinks; 4. Smith casts her vote in some election. In each of these instances what can Smith be understood as consenting to? Is she consenting to pay the bill for whatever meal she orders; (...) pay the fare for the journey to her named destination; sexual intimacy with Jones; and accept the authority of whatever individual or political part is elected? The fact that Smith does not actually express her consent to each of these states of affairs or outcomes need not mean that she is not giving her consent to them. The idea that individuals can give their consent in ways other than by means of a formal verbal expression of agreement is a familiar, if controversial, one. (shrink)

Among those who reject the Epicurean claim that death is not bad for the one who dies, it is popularly held that death is bad for the one who dies, when it is bad for the one who dies, because it deprives the one who dies of the good things that otherwise would have fallen into her life. This view is known as the deprivation account of the value of death, and Fred Feldman is one of its most prominent defenders. (...) In this paper, I explain why I believe that Feldman’s argument for the occasional badness of death fails. While staying within an Epicurean framework, I offer an alternative that adequately accounts for a significant range of widely held intuitions about prudential value. My account implies that death is almost always good for the one who dies, yet often less good than not dying. Finally, I discuss some puzzles that remain for my account and hint at possible ways to address them. (shrink)

In this paper I discuss the nature of consent in general, and as it applies to Carlos Nino’s consensual theory of punishment. For Nino the criminal’s consent to change her legal-normative status is a form of implied consent. I distinguish three types of implied consent: 1) implied consent which is based on an operative convention (i.e. tacit consent); 2) implied consent where there is no operative convention; 3) “direct consent” to the legal-normative consequences of a proscribed act – this is (...) the consent which Nino employs. I argue that Nino’s conception of consent in crime exhibits many common features of “everyday” consent, which justify that it be classed as a form of (implied) consent. h us, Nino is right to claim that the consent in crime is similar to the consent in contracts and to the consent to assume a risk in tort law. (shrink)