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SOLIDARITY AND JUSTICE AS GUIDING PRINCIPLES IN GENOMIC RESEARCH
Author(s) -
HOEDEMAEKERS ROGEER,
GORDIJN BERT,
PIJNENBURG MARTIEN
Publication year - 2007
Publication title -
bioethics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.494
H-Index - 55
eISSN - 1467-8519
pISSN - 0269-9702
DOI - 10.1111/j.1467-8519.2007.00562.x
Subject(s) - solidarity , autonomy , economic justice , ideal (ethics) , informed consent , social solidarity , sociology , epistemology , law , political science , medicine , social science , alternative medicine , philosophy , pathology , politics
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.