Genetic screening: ethical issues - Nuffield Council on Bioethics

i
Preface
The <strong>Nuffield</strong> <strong>Council</strong> on Bioethics was established in 1991 to consider <strong>ethical</strong>
<strong>issues</strong> presented by advances in biomedical and biological research. It had no
difficulty in deciding to make genetic <strong>screening</strong> the subject of its first report.
<strong>Genetic</strong> research differs from many areas of medical advance in three distinct
ways: first, the astonishing speed of its development; second, its inescapable
effect not only on individuals, but also on their families and society generally;
and, third, the fear it arouses that it may be interfering with the basis of life
itself.
Hence the urgency of examining the complex range of <strong>ethical</strong> <strong>issues</strong> and
exposing them to wide professional and public debate, and of identifying the
action to be taken and the further work to be done. To this end the <strong>Council</strong> set
up a Working Party, under the chairmanship of Professor Dame June Lloyd,
and has carefully considered and endorsed its report. It now looks to the
Government and to other bodies to initiate the reviews and discussions which
the report recommends.
As Chairman of the <strong>Council</strong>, I wish to highlight four important features of the
report:-
The difficulty in assessing individual health risks exposed by
genetic <strong>screening</strong>.
Even with greater medical knowledge there may be a wide margin
of error in assessing the risks affecting individuals and their
families. This will accentuate the <strong>ethical</strong> problems relating, in
particular, to employment and insurance.
The increased complexity of the <strong>ethical</strong> aspects of
confidentiality.
The serious implications which <strong>screening</strong> results may have for a
family pose potentially difficult problems in applying the
longstanding <strong>ethical</strong> principle of confidentiality between the
professional and the individual screened.
The demands made upon professional and health resources
by the required <strong>ethical</strong> procedures.
These demands are likely to be heavy, but they must be met if the
recommendations of the report are to be fulfilled.