Ethics of Research with Decisionally Impaired Patients

Chapter
First Online:
Part of the International Library of Ethics, Law, and the New Medicine book series (LIME, volume 45)

Abstract

The justification of non-therapeutic research on incapacitated persons is an ethical problem, because in this situation, both legitimising factors of research – informed consent and therapeutic benefit – are absent and the question arises as to whether such research is morally justifiable at all. The paper will ask if there could be arguments for such research. One argument could be that under certain circumstances, an institutionally decreed global renunciation of any type of research on this group of persons could also be illegitimate. Not doing research can do injury to the principle of Justice because in this manner the needs of a particular group may unjustifiably be ignored. This would aggravate the disadvantaged position of this group in a groundless manner and, in particular, would deprive its members of the basis of self-respect. According to the theory of justice of John Rawls each person has an equal right to the most extensive basic liberty compatible with the same liberty for others. These ‘primary goods’ are determined by the freedom and integrity of the person. Precisely this integrity of decisionally impaired persons would be endangered if one would abstain from research and thus relinquish the increase in knowledge related to their disease. Thus one could conclude, at least from Rawls’ first principle that society must take on a duty to guarantee the degrees of freedom for cognitively impaired persons and thus also support the efforts for their healing (Maio 2003).

Keywords

Minimal Risk Test Subject Human Dignity Test Person Impaired Patient 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.
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Copyright information

© Springer Science+Business Media B.V. 2010

Authors and Affiliations

  1. 1.Institute for Bioethics and History of MedicineUniversity of FreiburgFreiburgGermany

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