ABSTRACT In genomic research the ideal standard of free, informed, prior and explicit consent is sometimes difficult to apply. This has raised concern that important genomic research will be restricted. Different consent procedures have therefore been proposed. This paper explicitly examines the question how, in genomic research, the principles of solidarity and justice can be used to justify forms of diminished individual control over personal data and bio‐samples. After a discussion of the notions of solidarity and justice and how they (...) can be related to health care and genomic research, we examine how and in which situations these notions can form a strong moral basis for demanding certain financial sacrifices. Then we examine when these principles can justify consent procedures which diverge from the ideal standard. Because much genomic research is not expected to lead to immediate (clinical) benefits we also discuss the question of whether we can be obliged to make any sacrifices for future (not yet existing) patients. We conclude with the formulation of a number of conditions that have to be met before autonomy sacrifices can be reasonably demanded in genomic research. (shrink)

In genomic research the ideal standard of free, informed, prior, and explicit consent is believed to restrict important research studies. For certain types of genomic research other forms of consent are therefore proposed which are ethically justified by an appeal to the common good. This notion is often used in a general sense and this forms a weak basis for the use of weaker forms of consent. Here we examine how the notion of the common good can be related to (...) individual health, health care, and genomic research and we use this analysis to propose more precise criteria to justify forms of consent which diverge from the ideal standard. (shrink)

The concept of ‘humane healthcare’ cannot and may not be limited to a personal virtue. For elucidating its meaning and making it functional as a critical ethical criterion for healthcare as a social institution, it is necessary to reflect on the social, cultural, and historical conditions in which modern healthcare finds its offspring and its further development. Doing this is the object and aim of social ethics. Social ethics in itself covers a broad area of different approaches. A main division (...) can be made between a liberal and a communitarian approach. This article focuses on the latter and concentrates on one of its representatives, Charles Taylor. The paper starts with two clarifying paragraphs: one about the terms humane and human, a second about the scope of social ethics. Next, because the term humane presupposes a certain view of man, attention will be paid to the lack of consensus in this respect within modernity, using some reflections of Taylor. In his view, resigning in this lack is a threat for one of the main motives behind modernity: the pursuit of a good and meaningful life. In the following section Taylor's analysis is applied to contemporary healthcare, by means of two examples. At the end the question is raised how to promote humane healthcare? In a short and conclusive sketch, three suggestions are offered for further research: scrutiny of goals and meanings within healthcare and culture, the broadening of the concept of autonomy and the upholding of human dignity as an intrinsic and imperative value. (shrink)