Genetic Counselling
Helping people faced with a diagnosis of genetic disease
to understand both the factual information about the disease and
the effect it will have on their lives, so that they can reach
their own decisions about the future.
People seeking genetic counselling may be newly diagnosed
patients, new parents or couples planning a pregnancy, or family
members concerned that they too may carry a disorder. Counselling
aims to bridge the gap for them between the often complex and fast
moving field of genetics and their everyday world. It helps them
understand the nature of the disease and what having it will mean
in practical terms, what options there might be for
prevention/testing, the risks of recurrence and the implications
for other family members.
Crucially, genetic counselling is non-directive, supporting
people in reaching their own decisions, based on their own unique
medical and social circumstances.
Genetic counselling touches very deeply on human emotions of
guilt, grief and fear, and on deeply felt moral beliefs.
Counsellors are trained to help people through the inevitable
emotions that a diagnosis arouses - and which ripple through
the whole family because of their shared genetic inheritance. No
two patients are the same, and genetic counselling has to be
sensitive to the fact that a diagnosis can have very different
meaning to different people.
Counsellors work as part of a wider healthcare team, involving
clinical consultants, nursing and primary care teams. Most people
are referred through a GP or hospital consultant following a
diagnosis. Others seek advice following the discovery of a genetic
disease in their family. They may want immediate help, or choose to
let the diagnosis sink in.
The first meetings generally involve sorting out a family
history and gaining additional diagnostic information if necessary.
Correct diagnosis is absolutely vital for genetic counselling to be
effective, and people may be referred for further testing by a
clinical geneticist. Once the diagnosis is clearly established, the
counsellor can then tailor the sessions to meet the family's
specific needs.
Genetic counsellors are specially trained professionals, most of
whom come from a medical or nursing background and who have first
hand knowledge of genetic disease and its practical impact. It is
essential that they keep up-to-date in a rapidly developing field,
which often raises difficult ethical challenges as the pace of
genetic research allows more and more diagnoses that cannot be
matched by options of treatment and cure.