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Psychosocial aspects of Predictive
testing
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Psychosocial aspects of Predictive testing The increasing
knowledge about the human genome has resulted in the
availability of a steadily increasing number of predictive
genetic tests. Predictive genetic tests give asymptomatic
persons, who are at increased risk for a specific hereditary
disease running in the family, the possibility to know
with certainty or with a high probability whether they
will become affected later in life. When predictive
testing for Huntington’s disease became available
in the late 1980’s, it was a milestone in the
history of genetics, although there were fears about
how individuals would cope with the results of tests.
Today this possibility exists for several neurogenetic
diseases, hereditary cancers and hereditary heart diseases.
At-risk persons can choose whether they want to know
or not. In some situations there are preventive measures
to early detect, to postpone or to prevent the disease,
in other situations this is not possible. The complexity
of predictive testing for late onset diseases necessitates
a careful multidisciplinary approach tailored to the
needs of the testees. Moreover, follow-up studies are
of the utmost importance to evaluate the long-term impact
of predictive testing on the tested person and his/her
family.
EMPAG-conferences have always paid attention to psychosocial
factors playing a part in the uptake for predictive
testing and to the evaluation of the psychosocial impact
of the test result. During the meeting in Munich
new data will be presented during a plenary EMPAG-session.
For Huntington’s disease
short-term paradoxical reactions and long-term psychological
and social adjustments in persons with a favourable
test result will be illustrated based on a large number
of interviews. Another presentation will deal with the
impact of the test result on the perceived quality of
the relationship with the partner in the five-year period
after testing and on the perceived changes in the relationship.
The psychosocial impact of predictive testing for hereditary
breast and ovarian cancer will be discussed in
another presentation based on a multi-centre study with
a three-year follow-up period. Predictive testing for
hereditary melanoma will
receive attention in two presentations: the first focuses
on the reasons for reluctance to genetic testing and
the second on psychosocial issues for families at high
risk. In the context of hereditary heart disease the
clinical indications and an ethical analysis of the
reasons for and against predictive testing for hypertrophic
cardiomyopathy in children will be presented.
Overall this session on psychosocial aspects of predictive
testing will elicit interesting discussions.
Gerry Evers-Kiebooms and Lauren
Kerzin-Storrar
(Co-chairs of the EMPAG scientific programme committee)
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Pressekontakt
Dr. rer. biol. hum. Christine Scholz
Deutsche Gesellschaft für Humangenetik e.V.
Inselkammerstr. 5
82008 München-
Unterhaching
Tel. (0)89/61 45 69 59
Fax (0)89/55 02 78 56
Email presse@gfhev.de
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