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)

We discuss the implications of the findings reported in the target article for moral theory, and argue that they represent a clear and genuine case of fundamental moral disagreement. As such, the findings support a moderate form of moral anti-realism – the position that, for some moral issues, there is no fact of the matter about what is right and wrong.

Evidence-based medicine has always required integration of patient values with ‘best’ clinical evidence. It is widely recognized that scientific practices and discoveries, including those of EBM, are value-laden. But to date, the science of EBM has focused primarily on methods for reducing bias in the evidence, while the role of values in the different aspects of the EBM process has been almost completely ignored.

This case study examines the failure of top management at Putnam to exercise ethical behavior in the face of their clear knowledge of corruption in the company. Market timing by employees was expressly forbidden by Putnam. Six employees, including two portfolio managers, repeatedly engaged in market timing activities from 1998 to 2003, garnering over a million dollars in personal profit. The CEO and key senior executives had factual knowledge of the abuses. Management failed to stop the abuses or to discipline (...) those involved until faced with charges from government regulators. By failing to do so, top management breached ethical duties to its shareholders and inflicted serious damage on the organization. The end results of top management's failure to address ethical violations were significant outflow of assets from Putnam's funds, payment of penalties, and loss of trust among investors. This case raises awareness about ethical issues surrounding mutual fund trading practices and the impact that top management can have on the ethical behavior of employees. (shrink)

Catholic employers and employees have been under increasing attack in the last fifty years by a growing number of public policy encroachments in the workplace that are in direct conflict with their religious convictions. In some instances, these threats have been successfully parried. Others remain a source of serious conflict. This article will summarize highlights of the last fifty years of public policy and jurisprudence as they relate to the ability of Catholic institutions to practice and enforce non-negotiable Catholic moral (...) doctrines. (shrink)

The use of evidence in medicine is something we should continuously seek to improve. This book seeks to develop our understanding of evidence of mechanism in evaluating evidence in medicine, public health, and social care; and also offers tools to help implement improved assessment of evidence of mechanism in practice. In this way, the book offers a bridge between more theoretical and conceptual insights and worries about evidence of mechanism and practical means to fit the results into evidence assessment procedures.

The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.

The American Journal of Bioethics, Volume 12, Issue 10, Page 9-10, October 2012.

To achieve impact, academics need to create personal impact development plans, focused on what and on whom to have an impact and the necessary competencies to do so. Profession and university leaders play a critical role in the successful implementation of such plans.

What is Japanese philosophy? This paper will address this question, not by giving a survey of the works of Japanese philosophers or a definition of the subject matter of Japanese philosophy, but by attempting to present how it emerged as a distinct philosophical tradition—by sketching the controversies that gave rise to its formation; the social, intellectual, and historical factors that paved the way to its development; and the revolution of thought which finally gave it the title “Japanese philosophy.” I will (...) argue that Japanese philosophy was born not because Japanese thinkers desperately wanted a philosophy that they could call their own, but because, first and foremost, they were thinking of ways to articulate the ever changing and paradoxical nature of reality. Formed by their religion and informed by the Chinese and Japanese classics, they used the language learned from the West and tried to answer the most fundamental questions of existence. A unique way of philosophizing thus emerged and became a true locus of dialogue between Eastern and Western thought.An Inquiry into the Historical Development of Philosophy in Japan. (shrink)

In much the same way that genomic technologies are changing the complexion of biomedical research, the issues they generate are changing the agenda of IRBs and research ethics. Many of the biggest challenges facing traditional research ethics today — privacy and confidentiality of research subjects; ownership, control, and sharing of research data; return of results and incidental findings; the relevance of group interests and harms; the scope of informed consent; and the relative importance of the therapeutic misconception — have become (...) important policy issues over the last 20 years because of the ways they have been magnified by genomic research efforts. Research that examines the ethical, legal, and social implications of human genomics research has become a burgeoning international field of scholarship over the last 20 years, thanks in part to its support first by the genome research funding bodies in the U.S. and then by national science agencies in other countries. (shrink)