Testing is available to help identify if a woman is likely to face one of her gender's worst fears: inherited breast and ovarian cancer. But significant questions have been raised among doctors and public health agencies about whether these tests are being offered to the women who can most benefit - consistent with the evidence-based guidelines for this testing - and whether the information learned from testing is being put to best use.
“Even the most brilliant medical science is flawed when not used appropriately”
A landmark study, to be funded by Aetna, will explore patterns of how and for what groups of women the available genetic tests for BRCA1 and BRCA2 mutations are being used in the community health care setting, and whether, as suspected, significant disparities exist in the use of these tests among women of different socioeconomic, racial and ethnic groups. The study also will examine the use of risk-reduction and screening services by patients following testing.
"Even the most brilliant medical science is flawed when not used appropriately," said Anne Beal, M.D., M.P.H., president of the Aetna Foundation. "In the case of BRCA testing, there is valid concern that some women are receiving this test unnecessarily, while others, particularly among racial and ethnic minorities, as well as poorer women, should be receiving these critical tests and are not. This study may validate the need for specific strategies to eliminate barriers to these tests - whether they are knowledge-based, culturally-based, or access-based - and help improve the health outcomes among high-risk poor or minority women."
According to the American Cancer Society, breast cancer is the second-most common cancer and is the second leading cause of cancer death among women in the United States. Some women inherit a genetic defect that puts them at very high risk of breast and ovarian cancer. Genetic testing is available to help identify these women so extra measures can be taken either to prevent cancer from occurring, or to ensure through careful monitoring that cancer is detected in its very earliest stages when it is highly curable. However, questions have been raised about whether the right women are taking advantage of these genetic tests, and there is scant published research to answer those questions.
"To date, there has been no national study of BRCA testing in the community settings where most people receive their care," said Rebecca Sutphen, M.D., Professor of Genetics at the University of South Florida and lead investigator on the planned study. "We need to ask, who is being tested? Do they have access to the right experts and the right information to allow them to make informed decisions about testing? What choices are they being given and what options are they choosing to manage their cancer risk? The answers to these questions have tremendous public health impact."
"Health plan data contains a rich source of information that can be used to develop evidence about the effectiveness of clinical care," said Joanne Armstrong, M.D., Sr. Medical Director, head of Women's Health, Aetna. "The Agency for Healthcare Research and Quality (AHRQ) and the Centers for Disease Control and Prevention (CDC) have encouraged and promoted the use of health plan data to better understand the effectiveness of care and have specifically highlighted inherited risk for breast and ovarian cancer as a high priority area for research."
Accordingly, the two-year study to be funded by Aetna will be the first of its kind to provide data on the use and outcomes of BRCA testing among a large, representative population of insured individuals in the United States.
The study will examine de-identified data on approximately 13,000 Aetna members who receive BRCA testing. It will be conducted by researchers from the University of South Florida and Georgetown University, in collaboration with the American Cancer Society.
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