Vulnerability is one of the least examined concepts in research ethics. Vulnerability was linked in the Belmont Report to questions of justice in the selection of subjects. Regulations and policy documents regarding the ethical conduct of research have focused on vulnerability in terms of limitations of the capacity to provide informed consent. Other interpretations of vulnerability have emphasized unequal power relationships between politically and economically disadvantaged groups and investigators or sponsors. So many groups are now considered to be vulnerable in (...) the context of research, particularly international research, that the concept has lost force. In addition, classifying groups as vulnerable not only stereotypes them, but also may not reliably protect many individuals from harm. Certain individuals require ongoing protections of the kind already established in law and regulation, but attention must also be focused on characteristics of the research protocol and environment that present ethical challenges. (shrink)

Biomedical and behavioral research may affect strongly held social values and thereby create significant controversy over whether such research should be permitted in the first place. Institutional review boards responsible for protecting the rights and welfare of participants in research are sometimes faced with review of protocols that have significant implications for social policy and the potential for negative social consequences. Although IRB members often raise concerns about potential long-term social implications in protocol review, federal regulations strongly discourage IRBs from (...) considering them in their decisions. Yet IRBs often do consider the social implications of research protocols and sometimes create significant delays in initiating or even prevent such research. The social implications of research are important topics for public scrutiny and professional discussion. This article examines the reasons that the federal regulations preclude IRBs from assessing the social risks of research, and examines alternative approaches that have been used with varying success by national advisory groups to provide such guidance. The article concludes with recommendations for characteristics of a national advisory group that could successfully fulfill this need, including sustainability, independence, diverse and relevant expertise, and public transparency. (shrink)

In the theater the fictional Dr. Kelekian’s relief that he does not have to talk to family members about his patient’s cancer treatment draws uneasy laughter from the audience. Doctors, patients, and family members alike recognize the situation, even if hearing it so baldly expressed discomfits them.Why do physicians and other health care professionals, including lawyers and bioethicists, so often view families as “trouble”? And why do families so often see medical professionals as uncaring and uncommunicative? Presumably everyone wants the (...) same goal—recovery or the best possible outcome for the patient. And yet trouble clearly exists. We do not see the problem as one of “dysfunctional families” or “callous doctors,” although there are undoubtedly many of each. (shrink)

: Advances in medical technology now permit children who need ventilator assistance to live at home rather than in hospitals or institutions. What does this ventilator-dependent life mean to children and their families? The impetus for this essay comes from a study of the moral experience of 12 Canadian families—parents, ventilator-dependent child, and well siblings. These families express great love for their children, take on enormous responsibilities for care, live with uncertainty, and attempt to create "normal" home environments. Nevertheless, they (...) experience social isolation, sometimes even from their extended families and health care providers. Their lives are constrained in many ways. The challenges faced by parents of technology-dependent children raise questions of justice within society and within families. (shrink)

In the theater the fictional Dr. Kelekian’s relief that he does not have to talk to family members about his patient’s cancer treatment draws uneasy laughter from the audience. Doctors, patients, and family members alike recognize the situation, even if hearing it so baldly expressed discomfits them.Why do physicians and other health care professionals, including lawyers and bioethicists, so often view families as “trouble”? And why do families so often see medical professionals as uncaring and uncommunicative? Presumably everyone wants the (...) same goal—recovery or the best possible outcome for the patient. And yet trouble clearly exists. We do not see the problem as one of “dysfunctional families” or “callous doctors,” although there are undoubtedly many of each. (shrink)

This essay interprets the controversy over Richard Serra's monumental sculpture, Tilted Arc , which was designed for a public plaza in downtown Manhattan in 1979 and then torn down five years later after intense public outcry. Levine reads this controversy as characteristic of contemporary debates over the arts, which continue the tradition of the nineteenth century avant-garde, pitting art against a wider public, and insisting that art must deliberately resist mainstream tastes and values in favor of marginality and innovation. This (...) definition of art has posed a lasting dilemma for democratic societies: how, after all, should a democracy deal with art that represents an intentional rejection of the majority? The problem becomes even more intractable when it comes to avant-garde art commissioned for public spaces, where the art object can challenge public tastes and movements in a way that is inescapable for those who must live and work in the space. Disturbed by the imposition of a massive and incomprehensible art object in a public plaza, Serra's opponents argued that Tilted Arc frustrated a whole range of socially beneficial activities, labor and leisure alike. And they claimed that Serra's supporters were dangerously anti-democratic. But despite the avant-garde's challenge to majority tastes, this essay makes the case that it remains a democratic value to continue to sponsor avant-garde art in public spaces. (shrink)