With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...) these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: Address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures. (shrink)

Despite criticism that dignity is a vague and slippery concept, a number of international guidelines on bioethics have cautioned against research that is contrary to human dignity, with reference specifically to genetic technology. What is the connection between genetic research and human dignity? In this article, I investigate the concept of human dignity in its various historical forms, and examine its status as a moral concept. Unlike Kant's ideal concept of human dignity, the empirical or relational concept takes human dignity (...) as something that is affected by one's circumstances and what others do. I argue that the dignity objection to some forms of genetic research rests on a view of human nature that gives humans a special status in nature – one that is threatened by the potential of genetic research to reduce individuals to their genetic endowment. I distinguish two main philosophical accounts of human nature. One of these, the Aristotelian view, is compatible with the use of genetic technology to help humans realize their inherent potential to a fuller extent. (shrink)

While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been la...

This paper defends human dignity in two ways. First, by confronting the criticism that human dignity does not serve an important function in contemporary moral discourse and that its function can be sufficiently performed by other moral terms. It is argued that this criticism invites a danger of moral reductionism, which impoverishes moral discourse. The authority of moral philosophy to correct widely shared moral intuitions, rooted in experiences of grave injustices and wrongs, is questioned. Secondly, dignity is defended by showing (...) what is needed to uphold it, both in theory and practice. It is argued, and demonstrated through examples, that human dignity as a universal value ascribed to human beings and the virtue of dignified action are intimately related. This is fleshed out in terms of Kant’s analysis of respect in the practical sense and of virtue as a commitment to the value of dignity as a constitutive end of our moral order. It is furthermore argued that theoretical attempts to ground respect for dignity in human capacities lead to a moral impasse. It is necessary to act as if every human being is worthy of respect. This practical approach requires institutions and specified moral obligations that are integral to the democratic ethos and the rule of law, which guarantees the equal status of human beings. This practical task requires that we consistently tease out and act on the implications of these principles rather than seek deeper justification for the equal worth of humans, articulated in the term human dignity. (shrink)