Transition From Research to Disclosure in Human Genetics
Participants will receive pre-test genetic counseling in one of three ways: (1) in person at
MD Anderson; (2) by telephone with an MD Anderson Genetic Counselor/study professional; (3)
with a local Genetic Counselor in conference with the MD Anderson Genetic Counselor/study
professional. After receiving pre-test genetic counseling, participants will be given the
opportunity to schedule a submission of a small sample of blood (about 6 tablespoons) for
genetic testing for p53.
Participants who submit a sample will be required to see a genetic counselor/study
professional to receive the results of the genetic test. Genetic counseling may take place
at MD Anderson at no cost. Participants may wish to have counseling close to their home,
though they then are responsible for the cost of the counseling. If, after talking to the
counselor/study professional, the participant wants to know the results of the test, he or
she will be told. A participant will be given more counseling and advice on what other care
might be needed and what other actions they should take.
If you have a child under the age of 27, you will fill out survey that will ask about how
you would feel about your child taking part in genetic testing. This survey will take about
15-20 minutes to complete.
You will either fill out this survey over the telephone or it will be mailed to you. If it
is by mail, you will be given a self-addressed stamped envelope to send the survey back to
the study staff.
Participants who decide to know the test results will schedule a telephone conversation with
the genetic counselor/study professional within 2-3 months. This will include more
counseling, with additional follow-up as needed.
The test results and the survey will be kept private. Names will not be used in computer
This is an investigational study. About 800 people will be offered genetic testing. This
study is being performed only at MD Anderson.
Observational Model: Case Control, Time Perspective: Prospective
Number of Participants Received Pre-test Genetic Counseling
Louise C. Strong, MD
M.D. Anderson Cancer Center
United States: Institutional Review Board
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