4.8 Addresses Huntington's Disease
"We have dealt with the situation relating to genetic tests that may be undertaken as a part of a diagnosis
of a medical condition.
An important element of genetic testing is the issue of predictive genetic testing of health people
for conditions which occur in later life, or for a pre-disposition to a complex disease. Such a test result may indicate
that the individual has a nigh likelihood of developing the disorder or of excluding it.
Presymptomatic testing is most frequently used for a condition that is inherited in a dominant manner and
leads to a disease later in life - for example Huntington's Disease. The term carrier testing is also
often used to describe such testing, but this may be confused with tests for genetic conditions that are inherited in a recessive
fashion, which we consider below.
4.9 There is a well developed approach to such testing, as
set out by the Advisory Committee on Genetic Testing (ACGT) in its Report on Genetic Testing For Late-Onset Disorders (1998):
"When an individual is able to give consent, specific freely given consent is required before testing.
In the case of pre-symptomatic genetic testing of healthy individuals, written consent should always be obtained, though written
consent is not in itself a substitute for careful face-to-face explanation."
Similar clear requirements are set out in international instruments such as the Bio-medicine
Convention and the UNESCO Universal Declaration. We did not detect any dissent from this position.
However, presymptomatic
genetic testing of children for late-onset conditions raises more complex moral question, which we discuss below.
