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/risin
  g_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
  cant consent to research protocols themselves.
• Proxy or substitute decision makers cant 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 individuals rights.
• Brown develops his views by looking at recent
  justifications of non-therapeutic research done
  on children.

7
Research on ChildrenRamsey vs. McCormick

• Ramsey Deontological approach since
  non-therapeutic research doesnt 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 doesnt 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 doesnt
  consider what benefits they are due from such
  research. Though non-therapeutic research doesnt
  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 alheimers
  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.