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When Joseph Murray performed the first successful living kidney
donor transplant in 1954, he thought this would be a temporary
stopgap. Today, we are no closer to the goal of adequate organ
supply without living donors-if anything, the supply-demand ratio
is worse. While most research on the ethics of organ
transplantation focuses on how to allocate organs as a scarce
medical resource, the ethical treatment of organ donors themselves
has been relatively neglected. In The Living Organ Donor as
Patient: Theory and Practice, Lainie Friedman Ross and J. Richard
Thistlethwaite, Jr. argue that living donor organ transplantation
can be ethical provided that we treat living solid organ donors as
patients in their own right. Ross and Thistlethwaite develop a
five-principle framework to examine some of the attempts to
increase living donation. It uses the three principles of the
Belmont Report: respect for persons, beneficence, and justice
modified to organ transplantation, as well as the principles of
vulnerability and special relationships creating special
obligations. Their approach requires that the transplant community
fully embrace current and prospective living organ donors as
patients to whom we have special obligations. Only when living
organ donors are regarded as patients in their own right and have a
living donor advocate team dedicated to their well-being can the
moral limits of living solid organ donation be realized and living
donors be given the full respect and care they deserve.
Lainie Ross presents a rigorous critical investigation of the
development of policy governing the involvement of children in
medical research. She examines the shift in focus from protection
of medical research subjects, enshrined in post-World War II
legislation, to the current era in which access is assuming greater
precedence. Infamous studies such as Willowbrook (where mentally
retarded children were infected with hepatitis) are evidence that
before the policy shift protection was not always adequate, even
for the most vulnerable groups. Additional safeguards for children
were first implemented in many countries in the 1970s and 1980s;
more recent policies and guidelines are trying to promote greater
participation. Ross considers whether the safeguards work, whether
they are fair, and how they apply in actual research practice. She
goes on to offer specific recommendations to modify current
policies and guidelines.
Ross examines the regulatory structures (e.g. federal regulations
and institutional review boards), the ad hoc policies (e.g. payment
in pediatric research and the role of schools as research venues),
the actual practices of researchers (e.g. the race/ethnicity of
enrolled research subjects or the decision to enroll newborns) as
well as the decision-making process (both parental permission and
the child's assent), in order to provide a broad critique. Some of
her recommendations will break down current barriers to the
enrolment of children (e.g. permitting the payment of child
research subjects; allowing healthy children to be exposed to
research that entails more than minimal risk without requiring
recourse to 407 panels); whereas other recommendations may
createnew restrictions (e.g., the need for greater protection for
research performed in schools; restrictions on what research should
be done in the newborn nursery). The goal is to ensure that medical
research is done in a way that promotes the health of current and
future children without threatening, to use the words of Hans
Jonas, "the erosion of those moral values whose loss . . . would
make its most dazzling triumphs not worth having."
Lainie Ross presents a rigorous critical investigation of the
development of policy governing the involvement of children in
medical research. She examines the shift in focus from protection
of medical research subjects, enshrined in post-World War II
legislation, to the current era in which access is assuming greater
precedence. Infamous studies such as Willowbrook (where mentally
retarded children were infected with hepatitis) are evidence that
before the policy shift protection was not always adequate, even
for the most vulnerable groups. Additional safeguards for children
were first implemented in many countries in the 1970s and 1980s;
more recent policies and guidelines are trying to promote greater
participation. Ross considers whether the safeguards work, whether
they are fair, and how they apply in actual research practice. She
goes on to offer specific recommendations to modify current
policies and guidelines. Ross examines the regulatory structures
(e.g. federal regulations and institutional review boards), the ad
hoc policies (e.g. payment in pediatric research and the role of
schools as research venues), the actual practices of researchers
(e.g. the race/ethnicity of enrolled research subjects or the
decision to enroll newborns) as well as the decision-making process
(both parental permission and the child's assent), in order to
provide a broad critique. Some of her recommendations will break
down current barriers to the enrolment of children (e.g. permitting
the payment of child research subjects; allowing healthy children
to be exposed to research that entails more than minimal risk
without requiring recourse to 407 panels); whereas other
recommendations may create new restrictions (e.g., the need for
greater protection for research performed in schools; restrictions
on what research should be done in the newborn nursery). The goal
is to ensure that medical research is done in a way that promotes
the health of current and future children without threatening, to
use the words of Hans Jonas, 'the erosion of those moral values
whose loss . . . would make its most dazzling triumphs not worth
having'.
Ross presents an original and controversial examination of the moral principles that guide parents in making health care decisions for their children, and the role of children in the decision-making process. She argues against the current movement to increase child autonomy, in favour of respect for family autonomy, and proposes significant changes in what informed consent allows and requires for paediatric health care decisions.
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