Genetic testing can now help identify genes that could possibly put you at risk for developing a number of chronic or sometimes fatal illnesses. But a new study says some medical personnel may not be equipped to offer the public these services.
"For me, it was a real wakeup call," Selma Schimmel said.
After fighting breast cancer, Schimmel discovered she carried the BRCA-1 gene mutation that would put her at higher risk of also developing ovarian cancer.
She decided to have her ovaries removed.
"Much to my shock, when I woke from surgery, I was told I already had ovarian cancer," she said.
She and her doctors believe that test saved her life.
But other patients could risk unnecessary surgical procedures and even anguish if they are not well counseled.
According to a new report, it is possible many won't be.
Genetic testing can help identify risk for a wide range of diseases in both children and adults.
But according to the research done by medical geneticist Dr. Maren Scheuner, there are not enough genetic specialists to respond to the current needs of patients. Also, some doctors don't know enough about genetic medicine in order to refer patients for testing or counseling.
"The primary care workforce and other health professionals lack knowledge about basic genetic concepts," Dr. Scheuner said. "And they lack confidence in their ability to provide these services."
Dr. Scheuner and her colleagues examined eight years of data about genetic medicine.
They found many questions need to be answered before new genetic discoveries actually translate into clinical practice.
"It's who delivers it, how we train them, where it's delivered," Dr. Scheuner said.
Researchers say legislation is also needed to protect those who have genetic testing in dealing with privacy and discrimination issues. They also found that most people need more information about the value of genetic testing for common chronic diseases.
The research was conducted by the Rand Corporation, a non-profit research and development organization. The study was funded by the Department of Veterans' Affairs Office of Research and Development.
For more information about this study, visit Jama.com.
