ADVANCE DIRECTIVES FOR NON-THERAPEUTIC DEMENTIA RESEARCH - SOME ETHICAL AND POLICY CONSIDERATIONS

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 .