Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued (...) that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified. (shrink)

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)

Kihlbom has recently argued that a system of seeking negatively informed consent might be preferable in some cases to the ubiquitous informed consent model. Although this theory is perhaps not powerful enough to supplant informed consent in most settings, it lends strength to Evans’ and Hungin’s proposal that it can be ethical to prescribe placebos rather than "active" drugs. This paper presents an argument for using negatively informed consent for the specific purpose of authorising the use of placebos in clinical (...) contexts. (shrink)

Informed consent is central to modern research ethics. Informed consent procedures have mainly been justified in terms of respect for autonomy, the core idea being that it should be every competent individual’s right to decide for herself whether or not to participate in scientific studies. A number of conditions are normally raised with regard to morally valid informed consent. These include that potential research subjects get adequate information, understand those aspects that are relevant to them, and, based on that information, (...) make a voluntary decision whether or not to participate. These conditions are meant to guarantee that participation is genuinely the individual’s own choice and is coherent with his or her authentic interests. (shrink)

Increasingly, bioethicists defend informed consent as a safeguard for trust in caretakers and medical institutions. This paper discusses an ‘ideal type’ of that move. What I call the trust-promotion argument for informed consent states:1. Social trust, especially trust in caretakers and medical institutions, is necessary so that, for example, people seek medical advice, comply with it, and participate in medical research.2. Therefore, it is usually wrong to jeopardise that trust.3. Coercion, deception, manipulation and other violations of standard informed consent requirements (...) seriously jeopardise that trust.4. Thus, standard informed consent requirements are justified.This article describes the initial promise of this argument, then identifies challenges to it. As I show, the value of trust fails to account for some commonsense intuitions about informed consent. We should revise the argument, commonsense morality, or both. (shrink)

The duty to procure informed consent (IC) from patients before any significant intervention is among the pillars of medical and research ethics. The provision by the doctor of relevant information about treatment and free decision-making by the patient are essential elements of IC. The paper presents cases of IC where the free decision about treatment is not causally related to the information provided, and claims that such cases pose a difficulty parallel to that presented by the Gettier Problem in epistemology. (...) In analogy to the original problem with the concept of knowledge, these Gettier-type cases show an indeterminacy in the concept of IC: we either need to add some explicit additional condition of causal connection between information and consent, or else we should understand the concept in a new way—specifically, since the practice of autonomy necessarily involves some consideration of the relevant information, we must understand free consent in a way that no longer refers to patient autonomy. (shrink)

Clinical use of placebos is controversial among bioethicists. While placebos have been shown to provide benefit for patients with some conditions, offering placebos to patients without disclosing that they are placebos raises ethical concerns, including the concern that this lack of transparency about the nature of placebos amounts to deceiving patients. Some have proposed open-label placebos as an ethically preferable alternative: patients are offered placebos and told that the treatment being offered is a placebo. To contribute to the ongoing discussion (...) about the ethics and feasibility of clinical use of placebos, we conducted focus groups to explore physician attitudes about clinical use of placebos, including non-disclosed and OLPs, and physician attitudes about the underlying ethical issues. We found that while the non-transparency and deceptiveness of offering non-disclosed placebos was a concern for some physicians, their primary focus when considering both non-disclosed and OLPs was identifying and weighing potential harms and benefits to patients. Some participants also felt further research and training in prescribing OLPs would be needed before they would be willing to use them in their practice. Data are available upon request. (shrink)