Women CAN Handle the Truth–About Cancer OR Alzheimer’s

Joi is again featured on the Ms. Magazine Blog:

The BRCA genes were discovered in 1994 and 1995, but when you visited your doctor anytime from 1995 through the early 2000s, chances are that she or he did not recommend that you test for a mutation on the genes that would indicate an increased chance of developing ovarian or breast cancers. Why not? Because the paternalistic feeling of much of the medical community was that women who might be carriers of mutations couldn’t handle knowing their risk.

In fact, in 1998, an esteemed panel of experts convened a conference at Stanford University to decide what to do with the newfound ability to test for these genes. Their conclusion? Genetic testing for BRCA1 and BRCA2:

… is not appropriate for widespread clinical use or population screening, but may be beneficial in some circumstances–for example, in families experiencing multiple cases of cancer. Testing would raise fewer problems if definitive preventive interventions were available for those with the mutations, and if society better protected people with genetic risk of cancer.

Some doctors went so far as to test women for BRCA mutations but then refused to tell them the results because they thought the knowledge would be harmful. Other experts at that time concluded: “There are no known methods for preventing breast or ovarian cancer that would be particularly important to women with versions of these genes.” Essentially, doctors were throwing up their hands and saying they didn’t have any good options, so foreknowledge could be a dangerous thing.

Fortunately, times have changed. Medical experts now agree that genetic testing for BRCA genetic mutations can save lives, and that interventions are available. And the feared psychological harms have not materialized. Numerous studies of at-risk women have been conducted over the past decade and the consensus is: Women can handle the truth! Studies of individuals receiving such genetic information suggest that those who do not carry “at-risk” genotypes derive psychological benefits, while those identified as at risk show no adverse effects, according to a 2009 study in the British Journal of Psychiatry.

Does this mean there are no psychological impacts from genetic testing and discovering you are at genetically high risk for cancer? No. Learning you are at high risk for cancer causes stress, no doubt. The women profiled in the book Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer candidly discuss the emotional toll of knowing about a BRCA mutation. But they also show how this knowledge can be empowering by allowing them to escape the cancers that have stricken other members of their family. Read more


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