Good news from genetic screening tests can bring more to its
recipients than relief: it also can bring doubts about the future and, in some cases, guilt.
Family Secrets~A Personal
Perspective -By Kaye Miller-shares her understanding of the impact of
secrets in families.Kaye chose to do this because if there is a pattern of secret keeping in families, discussions of rights,
choices and decision making become meaningless.
Testing is a tough issue. It is sometimes hard for those who choose to be tested
to understand why someone would choose not to, and vice versa, but it is important to remember that we are all different,
and different people make different choices.
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If you had a crystal ball, would you look into it to see your health
future? At UC Davis Medical Center there is one program doing some real life predicting and it involves complex a genetic
disease. |
A Talk given at the AGM by Julian Bennett How she lives
positively Huntington's in the family and also in herself. Having Huntington's has led Julian to search in her heart
for a response, bigger and deeper than the suffering the illness brings.
A very compelling short story written by a mother with children at risk
and The Stranger's [HD's], visit into their life.
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Tiresias
Complex- By Nancy Wexler. Once the test is
completely informative, barring laboratory error, these people may believe that their "excuse" is now gone and feel compelled
to take a test about which they are highly ambivalent. 1992 article
The
Waiting Game~Limbo & A Terminal Illness -There is a period of time of waiting that always happens when someone
is about to be diagnosed or waiting the results of a test or the outcome of an intervention. We call this being in a state
of limbo.
When What We Know Outstrips
What We Can Do - Not HD specific but a good article by Margaret McLean. Discusses The Rift
Between Diagnosis and Cure, Responsibilities to the Next Generation, Questions and Guidelines, What is the purpose of taking a particular genetic test? Who is affected by the results? Who
has control of genetic information? On what basis should someone undertake genetic intervention such as genetic constructive
surgery if and when it becomes available? | |
