Examining those risk and benefit perceptions utilised in the formation of attitudes and opinions about emerging technologies such as nanotechnology can be useful for both industry and policy makers involved in their development, implementation and regulation. A broad range of different socio-psychological and affective factors may influence consumer responses to different applications of nanotechnology, including ethical concerns. A useful approach to identifying relevant consumer concerns and innovation priorities is to develop predictive constructs which can be used to differentiate applications of (...) nanotechnology in a way which is meaningful to consumers. This requires elicitation of attitudinal constructs from consumers, rather than measuring attitudes assumed to be important by the researcher. Psychological factors influencing societal responses to 15 applications of nanotechnology drawn from different application areas were identified using repertory grid method in conjunction with generalised Procrustes analysis. The results suggested that people differentiate nanotechnology applications based on the extent to which they perceive them to be beneficial, useful, necessary and important. The benefits may be offset by perceived risks focusing on fear and ethical concerns. Compared to an earlier expert study on societal acceptance of nanotechnology, consumers emphasised ethical issues compared to experts but had less concern regarding potential physical contact with the product and time to market introduction. Consumers envisaged fewer issues with several applications compared to experts, in particular food applications. (shrink)

This article is concerned with the concept of “informed consent” as applied both in biomedical research involving human subjects and in clinical medicine in general. The current crisis over the elaboration and interpretation of the concept will be examined, along with the broader question of whether “informed consent” is any longer meaningful or viable as a criterion for complex bioethical policy-making. Finally, I will attempt to sketch a prognosis for the concept in doctor-patient relations, even if it is only wishful (...) thinking. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric (...) oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

Coercion by the recipient of consent renders that consent invalid. But what about when the coercive force comes from a third party, not from the person to whom consent would be proffered? In this paper I analyze how threats from a third party affect consent. I argue that, as with other cases of coercion, we should distinguish threats that render consent invalid from threats whose force is too weak to invalidate consent and threats that are legitimate. Illegitimate controlling third party (...) threats render consent invalid just as they do in two party cases. However, knowing that the consent is invalid is not sufficient to tell the recipient of consent what she may or should do. I argue that when presented with a token of consent from someone whom she thinks is experiencing an illegitimate controlling threat, the recipient may act on that token if and only if doing so represents a reasonable joint decision for her and the victim of coercion. The appropriate action for someone faced with third party coercion therefore depends on the other options open to her and those open to the victim of coercion. (shrink)

The American Journal of Bioethics, Volume 12, Issue 3, Page 35-36, March 2012.

The American Journal of Bioethics, Volume 11, Issue 8, Page 33-35, August 2011.

The American Journal of Bioethics, Volume 11, Issue 8, Page 23-24, August 2011.

For millennia physicians were admonished to obscure the details of patients’ illnesses and poor prognoses. The Hippocratic ethic precludes physicians from including patients in medical decisionmaking. That ethic demanded of doctors that they “[p]erform [their duties] calmly and adroitly, concealing most things from the patient … revealing nothing of the patient's future or present condition.”.

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)

This article is concerned with the concept of “informed consent” as applied both in biomedical research involving human subjects and in clinical medicine in general. The current crisis over the elaboration and interpretation of the concept will be examined, along with the broader question of whether “informed consent” is any longer meaningful or viable as a criterion for complex bioethical policy-making. Finally, I will attempt to sketch a prognosis for the concept in doctor-patient relations, even if it is only wishful (...) thinking. (shrink)

Technological developments often bring about new risks. Informed consent has been proposed as a means to legitimize the imposition of technological risks. This principle was first introduced in medical practice to assure the autonomy of the patient.The introduction of IC in the field of technological practice raises questions about the comparability of the type of informed consent. To what extent are thepossibilities to include laypeople in making decisions regarding risks similar in the technological field to giving informed consent in the (...) medical field and whatdoes this imply for the design and implementation of IC in the technological field? Medical and the technological practice are clearly alike in that both fieldsare characterized by highly specialized, technical knowledge which can be quite inaccessible to the average layperson. However, a fundamental difference ariseswith regard to the aim, knowledge of risks and exclusiveness of the practices in each field. The differences in aim imply that the necessity for each practice isperceived differently by laypeople, thus leading them to assess the respective risks differently. The differences in knowledge of risks arise from the variabilityin the ways that can be used to describe a given risk. Definition of risk in medical practice is more homogenous in this respect than the risk definition intechnological fields. Futhermore, medical practice tends to be more exclusive, leading laypeople immersed in that practice to necessarily embrace most of thefundamental underlying that practice. These differences result in divergent recommendations for the implementation of informed consent in the technological field, basically: there is a need for more extensive procedure and for less decisive authority for the individual. (shrink)

While the important challenges of public deliberations on emerging technologies are crucial to keep in mind, this paper argues that scholars and practitioners have reason to be more confident in their performance of participatory technology assessments (pTA). Drawing on evidence from the 2008 National Citizens’ Technology Forum (NCTF) conducted by the Center for Nanotechnology in Society at Arizona State University, this paper describes how pTA offers a combination of intensive and extensive qualities that are unique among modes of engagement. In (...) the NCTF, this combination led to significant learning and opinion changes, based on what can be characterized as a high-quality deliberation. The quality of the anticipatory knowledge required to address emerging technologies is always contested, but pTAs can be designed with outcomes in mind—especially when learning is understood as an outcome. (shrink)

The risks of novel technologies, such as nano(bio)technology cannot be fully assessed due to the existing uncertainties surrounding their introduction into society. Consequently, the introduction of innovative technologies can be conceptualised as a societal experiment, which is a helpful approach to evaluate moral acceptability. This approach is illustrated with the marketing of sunscreens containing nano-sized titanium dioxide (TiO2) particles. We argue that the marketing of this TiO2 nanomaterial in UV protective cosmetics is ethically undesirable, since it violates four reasonable moral (...) conditions for societal experimentation (absence of alternatives, controllability, limited informed consent, and continuing evaluation). To remedy the current way nano-sized TiO2 containing sunscreens are utilised, we suggest five complementing actions (closing the gap, setup monitoring tools, continuing review, designing for safety, and regulative improvements) so that its marketing can become more acceptable. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

Clinicians cannot obtain valid consent to treatment because they cannot guess which treatment option will serve a particular patient's best interests. These guesses could be made more accurately if patients were paired with providers who share their deep values.

The American Journal of Bioethics, Volume 11, Issue 8, Page 31-33, August 2011.

The principle of informed consent obligates physicians to explain possible side effects when prescribing medications. This disclosure may itself induce adverse effects through expectancy mechanisms known as nocebo effects, contradicting the principle of nonmaleficence. Rigorous research suggests that providing patients with a detailed enumeration of every possible adverse event—especially subjective self-appraised symptoms—can actually increase side effects. Describing one version of what might happen (clinical “facts”) may actually create outcomes that are different from what would have happened without this information (another (...) version of “facts”). This essay argues that the perceived tension between balancing informed consent with nonmaleficence might be resolved by recognizing that adverse effects have no clear black or white “truth.” This essay suggests a pragmatic approach for providers to minimize nocebo responses while still maintaining patient autonomy through “contextualized informed consent,” which takes into account possible side effects, the patient being treated, and the particular diagnosis involved. (shrink)

The therapeutic misconception has been seen as presenting an ethical problem because failure to distinguish the aims of research participation from those receiving ordinary treatment may seriously undermine the informed consent of research subjects. Hence, most theoretical and empirical work on the problems of the therapeutic misconception has been directed to evaluate whether, and to what degree, this confusion invalidates the consent of subjects. We argue here that this focus on the understanding component of informed consent, while important, might be (...) too narrow to capture the ethical complexity of the therapeutic misconception. We show that concerns about misplaced trust and exploitation of such trust are also relevant, and ought to be taken into account, when considering why the therapeutic misconception matters ethically. (shrink)

Several attempts have been made to transfer the concept of informed consent from medical and research ethics to dealing with affected groups in other areas such as engineering, land use planning, and business management. It is argued that these attempts are unsuccessful since the concept of informed consent is inadequate for situations in which groups of affected persons are dealt with collectively (rather than individually, as in clinical medicine). There are several reasons for this. The affected groups from which informed (...) consent is sought cannot be identified with sufficient precision. Informed consent is associated with individual veto power, but it does not appear realistic to give veto power to all individuals who are affected for instance by an engineering project. Most importantly, the concept of informed consent puts focus on the public’s acceptance of ready-made proposals rather than on its participation in the decision-making process as a whole, which includes the development of alternatives for the decision. Therefore, the concept of informed consent is not applicable to a company’s relations with groups and collectives. It may, however, be applicable to a company’s relations with individual persons such as customers and employees. (shrink)

There is interest in more and better interaction between civil society and actors developing nanotechnologies, nano-materials and nano-enabled products: government agencies but also branch organizations in the chemical sector position civil society organizations (CSOs) as ‘voices of civil society’, and invite CSOs to participate in multistakeholder events. In such events, CSOs are expected to articulate societal needs, issues and values so that these can be taken up by actors with institutional roles and mandates to develop and embed newly emerging nanosciences (...) and nanotechnologies (NEST). This article argues that such a division of moral labor between CSOs and nanotechnology actors is not productive to address NEST and its emerging societal issues. There is an assumption that societal issues are ‘out there’ and can be recognized by CSOs, while in fact, societal issues might co-evolve with new development trajectories and thus have to be discovered and articulated. More productive deliberation requires, ideally, overcoming the traditional division of moral labor between these two groups of actors: technology developers should also inquire into and articulate emerging societal issues, and CSOs should inquire into and reflect on actual development trajectories. In order to explore issues and repercussions that arise in such a repositioning, this article will discuss a bottom up experiment of such an interaction between a nanotechnology developer (DuPont) and a CSO (Environmental Defense Fund). Based on the empirical analysis of this bottom up experiment, tentative requirements will be developed for how joint inquiries between technology developers and CSOs can be realized on a larger scale in our society. (shrink)

While their strength, electrical, optical, or magnetic properties are expected to contribute a trillion dollars in global commerce before 2015, nanomaterials also appear to pose threats to human health and safety. Nanotoxicology is the study of these threats. Do nanomaterial benefits exceed their risks? Should all nanomaterials be regulated? Currently nanotoxicologists cannot help answer these questions because too little is known about nanomaterials, because their properties differ from those of bulk materials having the same chemical composition, and because they differ (...) so widely in their applications. Instead, this paper answers a preliminary ethical question: What nanotech policies are likely to contribute to society’s ability to give or withhold free informed consent to the potential risks associated with production and use of nanomaterials? This paper argues that at least four current policies appear to jeopardize the risk-disclosure condition that is required for informed consent. These are the funding problem, the conflict-of-interest problem, the labeling problem, and the extrapolation problem. Apart from future decisions on how to ethically make, use, and regulate nanomaterials, this paper argues that, at a minimum, these four policies must be modified. Government must spend greater monies on nanotoxicology; ensure independent nanotoxicology research; label consumer products containing nanomaterials; and avoid assuming that nanotoxicological properties are based merely on mass and chemical composition. Otherwise free informed consent to these new technologies and materials may be jeopardized. (shrink)

In order to explore public views on nanobiotechnology (NBT), convergence seminars were held in four places in Europe; namely in Visby (Sweden), Sheffield (UK), Lublin (Poland), and Porto (Portugal). A convergence seminar is a new form of public participatory activity that can be used to deal systematically with the uncertainty associated for instance with the development of an emerging technology like nanobiotechnology. In its first phase, the participants are divided into three “scenario groups” that discuss different future scenarios. In the (...) second phase, the participants are regrouped into three “convergence groups”, each of which contains representatives from each of the three groups from the first phase. In the final third phase, all participants meet for a summary discussion. This pilot project had two aims: (1) to develop and assess the new methodology and (2) to gather advice and recommendations from the public that may be useful for future decisions on nanobiotechnology (NBT). Participants emphasized that they wanted the technology to focus on solutions to environmental and medical problems and to meet the needs of developing countries. The need for further public participation and deliberation on NBT issues seemed to be acknowledged by all participants. Many of them also raised equality concerns. Views on the means by which NBT should be steered into socially useful directions were more divided. In particular, different views were expressed on how much regulation of company activities is needed to curb unwanted developments. The participants’ responses in a questionnaire indicate that the methodology of the convergence seminars was successful for decision-making under uncertainty. In particular, the participants stated that their advice was influenced both by access to different possible future developments and by the points of view of their co-participants, which is what the method is specifically intended to achieve. (shrink)