Testing A Child When Parent Hasn't Been Tested

Testing A Child
When Parent Hasn't Been Tested

Considerations:
Policy would vary among testing centers. Despite language in the guidelines suggesting that decisions should be weighed in favor of the person requesting testing, one HD family reported having been denied testing on this basis.

Ultimately, this is an issue within families, and the outcome has everything to do with which parties are willing to yield to other parties' interests.

From Guidelines for the Molecular Genetics Predictive Test in Huntington's Disease

of the International Huntington Association and the World Federation of Neurology

Recommendation 2.4

"Extreme care should be exercised when testing would provide information about another person who has not requested the test."

Comment 2.4

"This issue will arise when a child at 25% risk requests testing with full knowledge

that his or her parent does not want to know his or her own status. Every effort

should be made by the counselors and the individuals concerned to arrive at a

satisfactory resolution of this conflict.

A considerable majority of representatives from the lay organizations feel that if no

consensus can be reached, the right of the adult child to know should have priority

over the right of the parent not to know."
From HDSA Guidelines for
Genetic Testing for Huntington's Disease

"Testing an individual at 25% risk may reveal information about his or her at risk

parent. The potential impact on other family members needs to be considered.

For some parents, the prospect of this information is not particularly anxiety provoking. For other parents in other families, however, the impact of this information may be substantial.

Professionals offering this type of testing should explore the family dynamics and try

to assess the implications for other family members. A consensus on testing among

those individuals who are directly affected is the ideal situation, although this will not

always be possible."