The relevance of Rawls' principle of justice for research on cognitively impaired patients

An ethical conflict arises when we must performresearch in the interest of future patients,but that this may occasionally injure theinterests of today's patients.In the case of cognitively impaired persons, thequestion arises whether it is compatible withhumane healthcare not only to treat, but alsoto use these patients for research purposes.Some bioethicists and theologians haveformulated a general duty of solidarity, alsopertaining to cognitively impaired persons, as ajustification for research on these persons. Ifone examines this thesis from the theory ofjustice according to John Rawls, it is revealedthat such a duty of solidarity cannotnecessarily be extrapolated from Rawls'conception of justice. This is at least true ofRawls' difference principle, because accordingto the difference principle only those measuresare justifiable which serve the interest of therespective least well off. Those measures whichwould engender additional injury for the leastwell off could not be balanced by any utilityaccording to Rawls.However, John Rawls' difference principleis subordinate to the first principle,which is that each person has an equalright to the most extensive basic libertycompatible with the same liberty for others.These primary goods are determined by thefreedom and integrity of the person.This integrity of decisionally impaired personswould be in danger if one would abstain fromresearch and thus forego the increase inknowledge related to their disease. Thus onecould conclude, at least from Rawls' firstprinciple, that society must take on a duty toguarantee the degrees of freedom forcognitively impaired persons and thus alsosupport the efforts for their healing.     

Hotep's Story: Exploring the Wounds of Health Vulnerability in the US

A wide variety of forms of domination hasresulted in a highly heterogeneous health riskcategory, ``the vulnerable.' The study of healthinequities sheds light on forces thatgenerate, sustain, and alter vulnerabilities toillness, injury, suffering and death. Thispaper analyzes the case of a high-risk teenfrom a Boston ghetto that illuminatesintersections between ``race' and class in theconstruction of vulnerability in the US.Exploration of his ``wounds' helps specify howlarge-scale social and cultural forces becomeembodied as individual experience of disparatehealth risk. The case demonstrates that healthinequities would not occur if resources –employment, income, wealth, education, housing,profiling in the legal system, and health care– were more justly managed in keeping withstandards outlined in the Universal Declarationof Human Rights. Professional responses to the``wounds of vulnerability' may reveal importantaspects of who we are and what our work asscholars, practitioners, and advocates mustbecome.