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AbstractThe authors of "The Quiet Progress of the New Eugenics" (QPNE) assert that some current practices, such as euthanasia and/or assisted suicide (EAS) for disabled newborns, imply that some persons with disabilities have lives that are not worth living. I extend the QPNE's analysis in this commentary by exploring whether even in voluntary EAS for "unbearable suffering," the question of how we value the lives of disabled persons arises in a way that deserves more public discussion. I argue that the old and modern EAS regimes both create a class of persons whose lives are deemed by society as not worth living. I explain how the modern EAS regime's public goal of relieving suffering and its requirement for autonomous choice obscure but do not erase this fact. Although modern EAS regimes are based on suffering (not eugenics) and voluntary (not state coerced), they have the effect of creating lives that are societally deemed to be not worth living.

The ethical debate surrounding biobanks has focused on protecting donors' welfare and privacy. However, little attention has been given to the ethical significance of donor interests that go beyond privacy and welfare (non-welfare interests [NWIs]), such as their concerns about the moral or religious implications of researchers using their donated samples. Using an experimental survey design with 1,276 participants recruited via Amazon Mechanical Turk (MTurk), we studied the potential impact of eight NWI scenarios on people's attitudes toward research studies being performed on samples donated to biobanks by assessing willingness to donate, attitudes toward disclosure of NWIs, impact of timing and format of disclosure (number of NWIs disclosed on a page), and participant factors associated with willingness to donate. Baseline willingness to donate to biobanks prior to any mention of NWIs was comparable with previous studies, at 85% to 89%. Most participants wanted NWI disclosures prior to donation to biobanks, but far fewer favored specific consent. Overall pattern of responses showed that as participants receive more information about NWIs, willingness to donate decreases in a scenario dependent manner. Specifically, NWI concerns about profit seeking research and insurance risk assessment had the strongest impact, even greater than controversial issues such as reproductive research, regardless of political, religious, and most other characteristics of respondents. Based on the results, a schema of NWI types is proposed that could be used for further research and policy discussions.

The ethical debate surrounding biobanks has focused on protecting donors' welfare and privacy. However, little attention has been given to the ethical significance of donor interests that go beyond privacy and welfare (non-welfare interests [NWIs]), such as their concerns about the moral or religious implications of researchers using their donated samples. Using an experimental survey design with 1,276 participants recruited via Amazon Mechanical Turk (MTurk), we studied the potential impact of eight NWI scenarios on people's attitudes toward research studies being performed on samples donated to biobanks by assessing willingness to donate, attitudes toward disclosure of NWIs, impact of timing and format of disclosure (number of NWIs disclosed on a page), and participant factors associated with willingness to donate. Baseline willingness to donate to biobanks prior to any mention of NWIs was comparable with previous studies, at 85% to 89%. Most participants wanted NWI disclosures prior to donation to biobanks, but far fewer favored specific consent. Overall pattern of responses showed that as participants receive more information about NWIs, willingness to donate decreases in a scenario dependent manner. Specifically, NWI concerns about profit seeking research and insurance risk assessment had the strongest impact, even greater than controversial issues such as reproductive research, regardless of political, religious, and most other characteristics of respondents. Based on the results, a schema of NWI types is proposed that could be used for further research and policy discussions.

The COVID-19 pandemic put a large burden on many healthcare systems, causing fears about resource scarcity and triage. Several COVID-19 guidelines included age as an explicit factor and practices of both triage and € anticipatory triage' likely limited access to hospital care for elderly patients, especially those in care homes. To ensure the legitimacy of triage guidelines, which affect the public, it is important to engage the public's moral intuitions. Our study aimed to explore general public views in the UK on the role of age, and related factors like frailty and quality of life, in triage during the COVID-19 pandemic. We held online deliberative workshops with members of the general public (n=22). Participants were guided through a deliberative process to maximise eliciting informed and considered preferences. Participants generally accepted the need for triage but strongly rejected € fair innings' and € life projects' principles as justifications for age-based allocation. They were also wary of the € maximise life-years' principle, preferring to maximise the number of lives rather than life years saved. Although they did not arrive at a unified recommendation of one principle, a concern for three core principles and values eventually emerged: equality, efficiency and vulnerability. While these remain difficult to fully respect at once, they captured a considered, multifaceted consensus: utilitarian considerations of efficiency should be tempered with a concern for equality and vulnerability. This € triad' of ethical principles may be a useful structure to guide ethical deliberation as societies negotiate the conflicting ethical demands of triage.

The goal of democratic deliberation (DD) bioethics research is to elicit informed and considered opinions on ethically controversial issues. But the trustworthiness of DD outcomes depends on the quality of deliberations. We provide a framework to evaluate the quality of deliberations and apply that framework to a DD project on surrogate consent for dementia research involving randomly selected samples of the older general public. Using a mixed method approach, we found that participants were very satisfied with the sessions, learned and used new information, were respectful and collaborative, and were able to "reason together" to arrive at societal policy recommendations. Implications and limitations of the paper are also discussed.

The goal of democratic deliberation (DD) bioethics research is to elicit informed and considered opinions on ethically controversial issues. But the trustworthiness of DD outcomes depends on the quality of deliberations. We provide a framework to evaluate the quality of deliberations and apply that framework to a DD project on surrogate consent for dementia research involving randomly selected samples of the older general public. Using a mixed method approach, we found that participants were very satisfied with the sessions, learned and used new information, were respectful and collaborative, and were able to "reason together" to arrive at societal policy recommendations. Implications and limitations of the paper are also discussed.

In a liberal democracy, policy decisions regarding ethical controversies, including those in research ethics, should incorporate the opinions of its citizens. Eliciting informed and well-considered ethical opinions can be challenging. The issues may not be widely familiar and they may involve complex scientific, legal, historical, and ethical dimensions. Traditional surveys risk eliciting superficial and uninformed opinions that may be of dubious quality for policy formation. We argue that the theory and practice of deliberative democracy (DD) is especially useful in overcoming such inadequacies. We explain DD theory and practice, discuss the rationale for using DD methods in research ethics, and illustrate in depth the use of a DD method for a longstanding research ethics controversy involving research based on surrogate consent. The potential pitfalls of DD and the means of minimizing them as well as future research directions are also discussed.

In a Liberal Democracy, Policy Decisions regarding ethical controversies, including those in research ethics, should incorporate the opinions of its citizens. Eliciting informed and well-considered ethical opinions can be challenging. The issues may not be widely familiar and they may involve complex scientific, legal, historical, and ethical dimensions. Traditional surveys risk eliciting superficial and uninformed opinions that may be of dubious quality for policy formation. We argue that the theory and practice of deliberative democracy (DD) is especially useful in overcoming such inadequacies. We explain DD theory and practice, discuss the rationale for using DD methods in research ethics, and illustrate in depth the use of a DD method for a long-standing research ethics controversy involving research based on surrogate consent. The potential pitfalls of DD and the means of minimizing them as well as future research directions are also discussed.

With increasing numbers of studies on research ethics and a need to improve the recruitment of research subjects, the ability to measure attitudes toward biomedical research has become important. The Research Attitudes Questionnaire is a significant predictor of the public's attitudes toward and willingness to participate in research, yet limited data are available on its psychometric properties. This study establishes the scale's internal consistency and dimensionality using a large Internet-based sample from the United States. One item was removed due to a poor item-total correlation, and three additional items were removed which formed a reverse-wording measurement artifact factor. With improved internal consistency and dimensionality, the seven-item version has the advantages of shorter administration time and improved psychometric properties.

"Deliberative democracy" is an increasingly popular method for soliciting public input on health care policies. There are a number of ways of organizing deliberative democracy (DD) sessions, but they generally involve gathering a group of citizens, supplying them with information relevant to the policy in question, giving them time to interact with each other and with experts in the policy area, and collecting their informed and considered opinions. As the method has become more widely used, some have questioned the quality of the public input it generates. Although theorists of DD agree that "good" input – i.e., input that is the product of careful and thorough reflection – is an essential aspect of useful and effective deliberation, few have actually measured the quality of deliberative sessions. As part of a DD project organized to help guide policies on the morally complex question of allowing surrogate permission to enroll persons with dementia in medical research, we developed and tested measures of "quality of deliberation." After a brief discussion of the substantive results of our research – survey data from participants in the DD sessions and control groups showed a significant change in participants' attitudes toward surrogate consent – we examine the process by which this change occurred, describing and assessing the characteristics of our DD sessions. We use both quantitative and qualitative data from our DD sessions, conducted in southeastern Michigan, United States, to examine four dimensions of the quality of deliberation: 1) equal participation by all members of the session, 2) respect for the opinions of others, 3) a willingness to adopt a societal perspective on the issue in question (rather than a focus on what is best for participants as individuals), and 4) reasoned justification of one's positions. We demonstrate that DD can be reliably used to elicit opinions of the public and show how analysis of the quality of deliberations can offer insight into the ways opinions about ethical dilemmas ...