Rlp. Berghmans, ADVANCE DIRECTIVES FOR NON-THERAPEUTIC DEMENTIA RESEARCH - SOME ETHICAL AND POLICY CONSIDERATIONS, Journal of medical ethics, 24(1), 1998, pp. 32-37
This paper explores the use of advance directives in clinical dementia
research. The focus is on advance consent to participation of demente
d patients in non-therapeutic research involving more than minimal ris
ks and/or burdens. First, morally relevant differences between advance
directives for treatment and care, and advance directives for dementi
a research are discussed Then attention is paid to the philosophical i
ssue of dementia and personal identity, and the implications for the m
oral authority of research advance directives. Thirdly, a number of pr
actical shortcomings of advance directives for non-therapeutic dementi
a research are explored and attention is paid to the role of proxies.
It is concluded that upon a closer look the initial attractiveness of
advance directives for dementia research is lessened, and that it is d
oubtful whether these instruments can compensate for the lack of subje
ct consent in case of non-therapeutic dementia research involving more
than minimal risk and/or burdens for the incompetent demented subject
.