Advocacy group anecdotes present one-sided picture of genetic testing for breast cancer

“Advocacy group anecdotes present one-sided picture of genetic testing for breast cancer,” Mary Chris Jaklevic, Health News Review.

Genetic testing for breast and ovarian cancer risk is cheaper and easier than ever. But just because a test is available doesn’t mean everyone should get it. That message didn’t come through in a recent series of patient anecdotes published on Women’s Health magazine’s web site. The advocacy group Bright Pink was highlighted in these stories as providing tools and resources for women who want to know more about genetic testing.

What was missing from these stories?

A balanced discussion of genetic testing limitations; who is most at risk, and how that risk is calculated; who should be tested and why; what test results mean; and what should be done with those results. The advocacy group’s ties to industry were also missing.

While a few health professionals have asserted that genetic tests should be offered to all women as well as men in order to identify the small number who carry dangerous mutations, the idea is controversial. Genetics counselors generally don’t recommend testing based on curiosity alone.

Here are some key facts that Health News Review identifies as crucial to stories about genetic testing for breast and ovarian cancer:

  • Less than 1 percent of the general population has a mutation in the BRCA1 or BRCA2 genes, the most common genes associated with hereditary breast and ovarian cancer syndrome (HBOC), according to the American Society of Clinical Oncology.
  • Prevalence of BRCA mutations in the general population is 0.2 to 0.3 percent, or one in as many as 500 people according to data collected for the U.S. Preventive Services Task Force.
  • Testing positive does not mean a person will get cancer. It’s estimated that 55 to 65 percent of women who inherit the BRCA1 mutation and 45 percent of those who inherit the BRCA2 mutation will get breast cancer by age 70, according to the National Cancer Institute. An estimated 39 percent of women who inherit a BRCA1 mutation and 11 to 17 percent of women who inherit a BRCA2 mutation will develop ovarian cancer by age 70.
  • If a harmful mutation is found, there’s still uncertainty about the significance of that mutation in families where there’s no cancer history.
  • A negative result does not guarantee a person won’t get cancer. Only 10 to 15 percent of women diagnosed with breast cancer and a similar percentage of those with ovarian cancer have a BRCA mutation. Most cancers are tied to non-genetic factors such as age, lifestyle choices, and viral exposures.
  • Some gene mutations cannot be classified as harmful or benign, leaving people in a state of uncertainty.
  • A positive result can lead a person to feel anxious, depressed, or angry and face difficult choices about whether to have preventive surgery. There are no definitive next steps for women who test positive.

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