Recent policy developments in the area of livestock husbandry have suggested that, from the perspective of optimizing animal welfare, new animal husbandry systems should be developed that provide opportunities for livestock animals to be raised in environments where they are permitted to engage in “natural behavior.” It is not known whether consumers regard animal husbandry issues as important, and whether they differentiate between animal husbandry and other animal welfare issues. The responsibility for the development of such systems is allocated jointly (...) between farmers, regulators, different actors in the food chain, and consumers. This research focuses on understanding consumer attitudes and preferences regarding the development and introduction of such systems, to ensure that they are acceptable to consumers as well as producers, regulators, and scientists. Consumer perceptions of animal welfare and animal husbandry practices were evaluated using quantitative consumer survey, which focused on two animal husbandry issues – farmed pigs and farmed fish. Following pilot work, 1000 representative Dutch consumers were sampled about their attitudes to either pig or fish husbandry. The results indicated that consumers think about animal welfare in terms of two broad categories related to their health and living environment, but do not think about welfare issues at a more detailed level. Greater concern was expressed about the welfare of pigs compared to fish. Consumer trust in labeling also emerged as an important issue, since consumers need to trust different food chain actors with responsibility for promoting animal welfare, and are reluctant to consider the details of animal husbandry systems. As a consequence, a transparent, enforceable, and traceable monitoring system for animal welfare friendly products is likely to be important for consumers. (shrink)

Recent policy developments in the area of livestock husbandry have suggested that, from the perspective of optimizing animal welfare, new animal husbandry systems should be developed that provide opportunities for livestock animals to be raised in environments where they are permitted to engage in “natural behavior.” It is not known whether consumers regard animal husbandry issues as important, and whether they differentiate between animal husbandry and other animal welfare issues. The responsibility for the development of such systems is allocated jointly (...) between farmers, regulators, different actors in the food chain, and consumers. This research focuses on understanding consumer attitudes and preferences regarding the development and introduction of such systems, to ensure that they are acceptable to consumers as well as producers, regulators, and scientists. Consumer perceptions of animal welfare and animal husbandry practices were evaluated using quantitative consumer survey, which focused on two animal husbandry issues – farmed pigs and farmed fish. Following pilot work, 1000 representative Dutch consumers were sampled about their attitudes to either pig or fish husbandry. The results indicated that consumers think about animal welfare in terms of two broad categories related to their health and living environment, but do not think about welfare issues at a more detailed level. Greater concern was expressed about the welfare of pigs compared to fish. Consumer trust in labeling also emerged as an important issue, since consumers need to trust different food chain actors with responsibility for promoting animal welfare, and are reluctant to consider the details of animal husbandry systems. As a consequence, a transparent, enforceable, and traceable monitoring system for animal welfare friendly products is likely to be important for consumers. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

In Wrong Medicine, Lawrence J. Schneiderman, M.D., and Nancy S. Jecker, Ph.D., address issues that have occupied the media and the courts since the time of Karen Ann Quinlan. The authors examine the ethics of cases in which medical treatment is offered--or mandated--even if a patient lacks the capacity to appreciate its benefit or if the treatment will still leave a patient totally dependent on intensive medical care. In exploring these timely issues Schneiderman and Jecker reexamine the doctor-patient relationship and (...) call for a restoration of common sense and reality to what we expect from medicine. They discuss economic, historical, and demographic factors that affect medical care and offer clear definitions of what constitutes futile medical treatment. And they address such topics as the limits on unwanted treatment, the shift from the "Age of Physician Paternalism" to the "Age of Patient Autonomy," health care rationing, and the adoption of new ethical standards. (shrink)

The introduction of novel diagnostic techniques in clinical domains such as genomics and radiology has led to a rich ethical debate on how to handle unsolicited findings that result from these innovations. Yet while unsolicited findings arise in both genomics and radiology, most of the relevant literature to date has tended to focus on only one of these domains. In this article, we synthesize and critically assess similarities and differences between “scanning the body” and “sequencing the genome” from an ethical (...) perspective. After briefly describing the novel diagnostic contexts leading to unsolicited findings, we synthesize and reflect on six core ethical issues that relate to both specialties: terminology; benefits and risks; autonomy; disclosure of unsolicited findings to children; uncertainty; and filters and routine screening. We identify ethical rationales that pertain to both fields and may contribute to more ethically sound policies. Considerations of preserving public trust and ensuring that people perceive healthcare policies as fair also support the need for a combined debate. (shrink)

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

Background Informed consent is an integral component of good medical practice. Many researchers have investigated measures to improve the quality of informed consent, but it is not clear which techniques work best and why. To address this problem, we propose developing a core outcome set to evaluate interventions designed to improve the consent process for surgery in adult patients with capacity. Part of this process involves reviewing existing research that has reported what is important to patients and doctors in the (...) informed consent process. Methods This qualitative synthesis comprises four phases: identification of published papers and determining their relevance; appraisal of the quality of the papers; identification and summary of the key findings from each paper while determining the definitiveness of each finding against the primary data; comparison of key themes between papers such that findings are linked across studies. Results Searches of bibliographic databases returned 11,073 titles. Of these, 16 studies met the inclusion criteria. Studies were published between 1996 and 2016 and included a total of 367 patients and 74 health care providers. Thirteen studies collected data using in-depth interviews and constant comparison was the most common means of qualitative analysis. A total of 94 findings were extracted from the primary papers and divided into 17 categories and ultimately 6 synthesised findings related to: patient characteristics, knowledge, communication, the model patient, trust and decision making. Conclusions This qualitative meta-aggregation is the first to examine the issue of informed consent for surgery. It has revealed several outcomes deemed important to capture by patients and clinicians when evaluating the quality of a consent process. Some of these outcomes have not been examined previously in research comparing methods for informed consent. This review is an important step in the development of a COS to evaluate interventions designed to improve the consent process for surgery. Registration The study protocol was registered on the international prospective register for systematic reviews. (shrink)

An alternative notion of an existential quantifier on four-valued Łukasiewicz algebras is introduced. The class of four-valued Łukasiewicz algebras endowed with this existential quantifier determines a variety which is denoted by \. It is shown that the alternative existential quantifier is interdefinable with the standard existential quantifier on a four-valued Łukasiewicz algebra. Some connections between the new existential quantifier and the existential quantifiers defined on bounded distributive lattices and Boolean algebras are given. Finally, a completeness theorem for the monadic four-valued (...) Łukasiewicz predicate calculus corresponding to the dual of the alternative existential quantifier is proven. (shrink)