Barry Brown

1. Barry Brown Proxy Consent for Research on the Incompetent Elderly

2. Some Facts About Dementia • Currently no simple physiological test to diagnose dementia: “They put me through the whole rigmarole, a four-hour test that I came out of feeling like a total idiot. You come out thinking, ‘Where am I?’ ‘Who am I?’” • The social costs of dementia are staggering. • Rising Tide (http://www.alzheimer.ca/english/rising_tide/rising_tide.htm). • 2008 costs: $8 B/year direct costs - $15 B/year indirect costs • 2038 costs: $92B/year direct costs – $152B indirect costs

3. Justice • People with dementia not treated equally • E.g., less likely to receive palliative care than people with cancer • “The emphasis of resource allocation, prioritization, performance targets, research funding, education, and training has all been skewed towards higher tech treatments and ‘sexier’ conditions such as cancer and heart disease which affect younger people and away from the needs of older people with incurable long term conditions.” (British Geriatric Society)

4. Justice • Research papers on long-term conditions since 2002: • Cancer, 23.5%; • Cardiovascular diseases, 17.6%; • Dementia, 1.4% • Research dollars spent in 2007-08(in UK, publicly funded) • Cancer, 248.2 million pounds • Dementia, 32.4 million pounds

5. The problem, as Brown sees it • Most research on dementia patients is not therapeutic (in the short term and/or for this particular patient). • Most dementia patients lack competency and hence can’t consent to research protocols themselves. • Proxy or substitute decision makers can’t really consent to this either (& may be illegal).

6. The fix, as Brown sees it • We must abandon a utilitarian conception of social good pitted against a deontological notion of the individual’s rights. • Brown develops his views by looking at recent justifications of non-therapeutic research done on children.

7. Research on Children:Ramsey vs. McCormick • Ramsey: Deontological approach – since non-therapeutic research doesn’t benefit the child patient/research subject, to do such researchg would be to use the child purely as a menas to an end. • McCormick: Natural Law – life and health are fundamental natural goods and everyone, including children have a duty to seek and preserve them. Hence such research could be morally OK.

8. 2 puzzles • (1) Ramsey recognizes, but doesn’t take up the notion that therapeutic benefit may be indirect or remote, that a group, smaller than the pop as a whole but larger than the individual can be at risk, and that children can be involved in therapeutic research even if it poses considerable risk.

9. 2 puzzles • (2) Though McCormick thinks that fetuses, infants and children share some burden to engage in low or no risk nontherapeutic research, he doesn’t consider what benefits they are due from such research. Though non-therapeutic research doesn’t by definition benefit the patient herself, it can benefit members of the group to which the patient belongs in the future.

10. The common good of a disease community • Finnis: the common good is “a set of conditions which enables the members of a community to attain for themselves reasonable objectives, ot to realize reasonably for themselves the values for the sake of which they have reason to collaborate with each other (positively or negatively) in a community” (101).

11. Common good of a disease community • “The common good is thus not the sum of individual interests, but an ensemble of conditions which enable individuals to purpose their objectives or purposes, which enable them to flourish” (101). • This, the common good of the “alheimer’s community” could include the effort to cure or alleviate the disease, to embrace the promotion of research etc. (102).

12. Another way of putting this • Accept a relational view of autonomy with an emphasis on interdependence, emotion and relationships rather than a traditional view of it which emphasizes independence, rationality and non-interference. • People with dementia must be encouraged “to retain and express their sense of self, rather than simply being protected from harm or interference” We must enable them “to pursue activities that they appear to enjoy even if they lack the capacity to make relevant decisions.” (Nuffield Council, Dementia: Ethical Issues)

13. Another way of putting this • Rethink beneficence/non-maleficence • 1) moment by moment experiences • 2) list of things that a good life would have (e.g., intelligence, autonomy, etc.) • Conflicts between the two • Balancing act

14. Conclusion • Research that is “indirectly therapeutic” • Helping others as a way in which you help yourself (Hans Jonas). That is, furthers your self perception as the type of person that helps others.