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
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 presymptomatic 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.
presymptomatic genetic testing of children for late-onset conditions raises more complex moral question, which we discuss