Materials for Testing AA

Form Approved
OMB No. 0920-0800
Exp. Date 10/31/2021

Attachment C3: Materials for
Testing with African American
Young Women

What is genetic testing for cancer risk?
All humans inherit 23 pairs of chromosomes from their parents. Each of these chromosomes contain up to thousands of genes.
Genes contain information that tells our bodies how to function, like an instruction manual. There can sometimes be errors in that information, like a misspelled
word. These errors are called “mutations.”
Genetic tests for cancer risk look for mutations, or errors, in specific genes that increase the chance that someone may get cancer.

Are all genetic tests the same?
Not all genetic tests are the same. Genetic tests differ by how many errors or mutations they look for and where they look for them.
There are four types of genetic tests:
1) Single site or selected variants tests look for one or more specific mutations in specific locations on specific genes. These tests are best suited for those who
already know there is a cancer-causing genetic mutation in their family; otherwise a single-site test will provide limited information. Most direct to consumer tests
are selected variant tests.
2) Comprehensive mutation tests search in multiple locations for a specific type of mutation that can increase your chances of getting cancer. These tests are best
suited for individuals who have talked with a genetic counselor about their family history of cancer and have a good sense of what types of mutations might run in
their family.
3) Multi-gene or panel tests looks for several mutations in up to 30 genes that are all known to increase a person’s chances of getting cancer. Panel tests are best
suited for individuals who after talking to a genetic counselor are unclear about what gene(s) may be behind their family history of cancer.
4) Whole genome sequencing looks at every location in all of your genes. This is an uncommon type of testing that can be rather expensive.
Genetic tests can be accessed via three different routes: from a certified genetic counselor, from a medical doctor (i.e., your primary care provider or OB-GYN), or
from a direct-to-consumer testing kit. Direct-to-consumer test kits are advertised and sold online and in stores. Consumers can take these genetic tests without the
involvement of healthcare providers.

What kinds of results could I get from genetic testing?
If you have genetic testing for cancer risk, there are three types of results you could get:
1) Negative – This means the test did not find a mutation that increases your risk for cancer, but a negative result doesn’t mean you will never
get cancer. A genetic counselor can help you understand your cancer risk after testing negative. Depending on the type of test used, additional
genetic testing may be needed to confirm you are negative for a mutation.
2) Positive – This means the test found a genetic mutation that increases your chance of developing cancer. It does not mean you will definitely
get cancer just that you are more likely. A genetic counselor or other medical provider can talk to you about ways to decrease your chance of
developing cancer and additional tests that may be recommended for you.
3) Variant of Unknown Significance – This means that while the genetic test found a mutation, “researchers haven’t yet confirmed whether
this variant is a harmless change or a risk factor for cancer.” As researchers continue to gather new information, variants of unknown
significance may be reclassified and you may receive updated results.