In biobanks, a broader model of consent is often used and justified by a range of different strategies that make reference to the potential benefits brought by the research it will facilitate combined with the low level of risk involved (provided adequate measures are in place to protect privacy and confidentiality) or a questioning of the centrality of the notion of informed consent. Against this, it has been suggested that the lack of specific information about particular uses of the samples (...) means that such consent cannot be fully autonomous and so is unethical. My answer to the title question is a definite ‘yes’. Broad consent can be informed consent and is justified by appeal to the principle of respect for autonomy. Indeed, I will suggest that the distinction between the various kinds of consent is not a distinction between kinds of consent but between the kinds of choice a person makes. When an individual makes a choice (of any kind) it is important that they do so according to the standards of informed consent and consistent with the choice that they are making. (shrink)

Informed consent is a central topic in contemporary biomedical ethics. Yet attempts to set defensible and feasible standards for consenting have led to persistent difficulties. In Rethinking Informed Consent in Bioethics Neil Manson and Onora O'Neill set debates about informed consent in medicine and research in a fresh light. They show why informed consent cannot be fully specific or fully explicit, and why more specific consent is not always ethically better. They argue that consent needs distinctive communicative transactions, by which (...) other obligations, prohibitions, and rights can be waived or set aside in controlled and specific ways. Their book offers a coherent, wide-ranging and practical account of the role of consent in biomedicine which will be valuable to readers working in a range of areas in bioethics, medicine and law. (shrink)

We would not be far wide of the mark if we suggested that the prevailing social ideology is structured round the presumption that interpersonal and political relationships ought to be, and for the most part are, based on the mutual consent of the parties involved. Liberal democratic theory has secured for consent a crucial role in the justification of political obligation and authority. In law, the maximvolenti non fit injuria,to the one who consents no wrong is done, constitutes a defence (...) in cases where one person invades the interests of another. In the bioethical field, there is a preoccupation with the formulation of a standard of ‘informed consent’ in patient-doctor and subject-researcher relationships. And in the broader domain of ethical theory there is an influential view that consensual acts do not differ in moral quality from selfregarding behaviour. (shrink)

The article analyses the role and moral force of consent in BDSM (Sado-masochistic and related practice). The view defended accepts consent as a key feature in sexual morality, and explains in detail the relation between consent and autonomy. In brief, it is argued that consent as a genuine extension of personal autonomy both justifies and draws limits to justifiable BDSM-practices: autonomy-undermining practices cannot be justified by appealing to autonomy. The paper discusses in detail the necessary conditions for consent with an (...) emphasis on relevant pitfalls in the context of BDSM and moves to an analysis of the prevalent “official” morality of the BDSM-community, expressed in the slogan “safe, sane, and consensual.” Finally, it draws attention to an un-discussed parallel between sexual morality and the concept of exit-rights as it is known from political philosophy. (shrink)

We regularly wield powers that, upon close scrutiny, appear remarkably magical. By sheer exercise of will, we bring into existence things that have never existed before. With but a nod, we effect the disappearance of things that have long served as barriers to the actions of others. And, by mere resolve, we generate things that pose significant obstacles to others' exercise of liberty. What is the nature of these things that we create and destroy by our mere decision to do (...) so? The answer: the rights and obligations of others. And by what seemingly magical means do we alter these rights and obligations? By making promises and issuing or revoking consent When we make promises, we generate obligations for ourselves, and when we give consent, we create rights for others. Since the rights and obligations that are affected by means of promising and consenting largely define the boundaries of permissible action, our exercise of these seemingly magical powers can significantly affect the lives and liberties of others. (shrink)

Proper procedures for informed consent are widely recognized as an ethical requirement for biomedical research involving human beings, in particular as a means to respect the autonomy and personal integrity of potential and actual research participants.

Informed consent is considered by many to be a moral imperative in medical research. However, it is increasingly acknowledged that in many actual instances of consent to participation in medical research, participants do not employ the provided information in their decision to consent, but rather consent based on the trust they hold in the researcher or research enterprise. In this article we explore whether trust-based consent is morally inferior to information-based consent. We analyse the moral values essential to valid consent (...) – autonomy, voluntariness, non-manipulation, and non-exploitation – and assess whether these values are less protected and promoted by consent based on trust than they are by consent based on information. We find that this is not the case, and thus conclude that trust-based consent if not morally inferior to information-based consent. (shrink)

Traditional Informed Consent is becoming increasingly inadequate, especially in the context of research biobanks. How much information is needed by patients for their consent to be truly informed? How does the quality of the information they receive match up to the quality of the information they ought to receive? How can information be conveyed fairly about future, non-predictable lines of research? To circumvent these difficulties, some scholars have proposed that current consent guidelines should be reassessed, with trust being used as (...) a guiding principle instead of information. Here, we analyse one of these proposals, based on a Participation Pact, which is already being offered to patients at the Istituto Europeo di Oncologia, a comprehensive cancer hospital in Milan, Italy. (shrink)

The research importance of biobanked biological materials and their derived data is growing, especially as these are increasingly linked with individual and population‐level medical and health information. The number, diversity, and size of biobanks are growing in tandem. So, too, is the number of individuals whose donations are being used in biobank‐supported research, with or without their knowledge. Pretty soon, we all will be “participants” in a variety of research projects we know nothing about. Until recently, our leftover tissue or (...) deidentified medical information could be used for research without our consent or even our knowledge. Even if we've been asked–as the current regulations require when research uses are anticipated‐we were most likely asked to give a blanket consent to any future use, with no prospect of learning about or controlling how our material is later used. This is an ethically problematic state of affairs, but there are options for improving it. (shrink)