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Inside Information: 
Balancing interests in the use of personal genetic data
 
"This is a report by the Human Genetics Commission, published in May 2002, which results from HGC's review of the use of personal genetic information. This review incorporates the findings from HGC's consultation involving a wide range of people and organisations, including HGC's Consultative Panel."
Report from the Human Genetics Commission (2002)
The full report: [pdf links]
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  List of Abbreviations and Annexes I (Membership), II (Consultation process) and III (Evidence)
 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 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.

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