Incapacity and Care:
Controversies in Healthcare and Research
Edited by Helen Watt
Published by The Linacre Centre 2009
£11.95 (pb) 156 pp
Further Book Information and Ordering
Review by Pravin Thevathasan
This book seeks to answer the question how best to care for, respect and protect people with
mental incapacity. Many of the most serious questions in bioethics arise in circumstances where the patient is
not in a position to make a decision for him or herself and the book therefore examines the relationship of trust
on which health care is founded. Contributions are made by philosophers, legal experts, theologians and psychiatrists.
For the purposes of this review, I shall concentrate on three such contributions.
The bioethicsist, David Albert Jones examines the current concept of personhood. He notes that for many philosophers,
there appears to be a difference between a human person and a human being. However, once personhood is made to
be dependent on variable qualities such as intelligence, memory or awareness, there can be no non-arbitrary way
to say who passes the test of personhood and who fails. If the supposed criteria involve IQ, for example, then
why should those with a very high IQ be given the same status as those who barely make the threshold for IQ? Why
not distinguish between a distinction and a merit? If what really matters is the possession of certain personhood
enabling capacities, then we appear to be in the business of applying a test of mental capacity before we acknowledge
our common humanity.
If what is important is the autonomous freedom of action of the disabled person, then there is nothing obviously
important about the person who cannot exercise this freedom. An emphasis on respecting autonomy may inadvertently
reinforce the denial of the dignity of people with mental disabilities. There seems to be a link between dignity
and the ability to make choices for oneself. Jones proceeds to argue that there is a dignity in receiving as well
as in giving, in relative dependence as well as relative independence. The acknowledgement of this universal experience
of vulnerability and dependence in human life may provide a basis for equality within society. We are essentially
dependent and interdependent rational animals.
Psychiatrist Aaron Kheriaty examines certain historical state sanctioned atrocities perpetrated against the mentally
incapacitated in the 20th century and he notes that such atrocities were not limited to the Nazi regime. They existed
in the United States when the eugenics movement flourished from the 1920's until the 1950's. By 1926, 23 states
in the US had enacted non-voluntary sterilisation laws for eugenic and 'therapeutic'
reasons. Those targeted, as in Germany, were the 'insane' and 'feeble minded'. There were, however,
some prominent scientists such as Lionel Penrose who argued that societies should be judged by how well they care
for people with mental incapacity.
For Kheriaty, modern psychiatry almost always refers to dependence in pathological terms (eg. Dependent personality
disorder). This denial of our dependence can lead us to the mistaken view that the disabled are a special interest
group: "we forget that profoundly dependent persons are actually us
as we have been, as we sometimes are now, as we may well be in the future".
Bioethicist Helen Watt examines the case for justifying research without consent. Given the low status often attributed
to profoundly mentally disabled people, there is a need for caution in regard to research in this group. However,
should such research be totally excluded? According to Watt, a total ban would be unfair to those who might benefit
from such research, including the subject him or herself. Similar risks tolerated by healthy adult volunteers can
be tolerated for mentally disabled people in the context of research. Those with incapacity should not be entirely
deprived of the chance to contribute to the welfare of other people, especially in the group to which they belong.
In conclusion, this is an excellent contribution to the debate on incapacity and care, with submissions from a
variety of different disciplines.
Copyright © Pravin Thevathasan 2010
Version: 31st August 2010