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. You may have this blood test repeated if there are any problems in
the lab. The study doctor will discuss this with you.

Participants who submit a sample may choose to see a genetic counselor/study professional in
person or schedule a phone conversation 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.

The test results will be kept private. Names will not be used in computer records.

Inclusion Criteria:

2.0 Genetic testing

Members of families who have participated in the p53 project through Dr. Strong's lab are
eligible, via protocol P90-001. There are at least 145 kindreds including at least 800
participants living who may be at risk of carrying a p53 germline mutation. The
participants must provide an informed consent and be 18 years or older. We will include
English and non-English speaking participants. For non-English speaking participants to be
recruited, the consent documents has been translated into the language of the target
population in accordance with the IRB procedures.

2.1 Parents Attitudes toward testing children at risk for TP53 mutations

For the survey portion of this study, we will invite individuals who 1) are already
enrolled in the P90-001 study), 2) have been known to carry a germline p53 mutation, and 3)
have children who are less than 27 years old. Patients who agree to enroll in the survey
portion of the study will be presented with a consent statement and a printed copy of the
survey along with a postage-paid envelope which they can return (either by mail or in
person) at their convenience.

2.2 Psychosocial impact of participating in LFS screening

1. Adults who have undergone genetic testing and have a confirmed p53 mutation

2. Adults participating in LFS screening program

Exclusion Criteria: