background
information
According
to the MRC Strategic Plan, the four core values of the MRC are
human rights, innovation, learning and sustainability. The initiation,
intentions and consequences of health research involve human
beings. It is thus imperative that our research be grounded
and guided by the culture of human rights and ethics. The lessons
of human rights transgressions throughout history and in any
fabric of our society, in particular in health, should be a
stark reminder and a constant guide to our conscience as we
conceptualise research and conduct our business. It is therefore
vital that human rights and high ethical standards form a component
of out transformation strategy.
The ethics
policy of the MRC is clear. All research sponsored by the Council
must be of the highest ethics standards and no research will
be sponsored without ethics clearance from a Research Ethics
Committee recognised by the Council and which operates in accordance
with MRC ethics guidelines.
The
MRC adheres to the four pillars of ethics:
- beneficence
(benefit)
- non-maleficence
(lack of harm)
- autonomy
(respect for the person, a notion of human dignity)
- distributive
justice
Over the
past forty years an international consensus has developed on
what constitutes ethics principles within health research. Cancer
and AIDS have brought about fundamental changes in the principles
– with the rise of autonomy as a cardinal principle. Health
professionals placed the principle of non-maleficence ahead
of the patient autonomy. The hierarchy of medical ethics where
non-maleficence and beneficence are more important that autonomy
and distributive justice formed the bedrock of good clinical
practice and was challenged by patients with AIDS and cancer.
Most HIV-infected people live in developing countries and the
ethical dilemma of the cost of antiretroviral treatments and
patient care given limited health sector budget allocations
has deepened concerns about equity and justice and the need
to balance a person’s right to treatment with the responsibility
of physicians and policy-makers to protect public health. HIV/AIDS
activists have asserted the right of HIV-infected people to
have access to incompletely tested new treatments. Additionally,
they have also asserted the right to confidentiality. These
two assertions place the right of autonomy above the public
good and have resulted in restrictions in the use of traditional
public health approaches, such as surveillance, in managing
the HIV/AIDS pandemic. Advances in the management of electronically
collected and stored data have redefined the person as a data
set, causing a fundamental rethinking of the principles of confidentiality
and informed consent. Further, vulnerable groups, such as women,
children, the elderly, and prisoners, should not be deprived
arbitrarily of the opportunity to benefit from investigational
drugs, vaccines or devices.
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