| 3.
Ethics in genetic research and practice |
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3.1
A narrative of ethics
Scientific
enquiry is an art involving the study, pursuit and application
of research. The possibility of human benefit from this art
may be subject to the possibility of contingent or inadvertent
harm caused by a breach of values. These values, dubbed 'ethics',
are a systematic reflection by a community on the moral life
and its conflicts.14 Undoubtedly, these values differ between
communities, and they represent no more than the moral convictions
of thoughtful and conscientious people. For that very reason
a South African investigation of the convictions of our moral
community is imperative. These convictions are generally derived
from a compound of natural philosophy and religion, and reflect
intuitive principles. To some extent the same moral or ethical
standpoints are reflected in the Constitution of the Republic
of South Africa Act, No. 108 of 1996, for instance in the reverence
for life and respect for the dignity and integrity of the person;
the right to freedom of religion, belief and opinion, the respect
for privacy and the overarching importance of an open and democratic
society based on human dignity, equality and freedom.
There are
two fundamental elements to the analysis of constitutional rights
- the application and interpretation thereof. First, our Constitution
applies as between the State and individuals, and also, where
it appears from the nature of the right in question, as between
individuals. In the context of this debate, the rights of the
investigator or clinician on the one hand and the participant
on the other need to be considered. Second, in the interpretation
of the provisions of the Constitution, regard must be had to
the values that underlie an open and democratic society, based
on respect for human dignity, as well as equality and freedom.
Thus, the ambit of each right enshrined in the Constitution
is determined in the context of the environment in which we
live, and the application of these rights is sensitive to the
mores of society, as determined by a body of informed, impartial
and objective persons.
This book
embraces international viewpoints together with the values enshrined
in our Constitution and attempts to place the ethics of research
and practice within a South African framework.
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