Date: June 7, 2013
“Mom, how old was Grandma when she first got Alzheimer’s?” my young son asked me last week. I had long shielded my boys from the answer, knowing the genetic implications. But now he’d done the math. “I just read that children of people with early onset Alzheimer’s have a 1 in 2 chance of carrying the gene. Mom, I don’t want you to get Alzheimer’s!” he cried, dissolving into tears.
Such is the genetic world we live in today—a world awash in genomic information, with genetic tests now available for more than 2,500 diseases.
In some cases, genetic knowledge is power. Celebrity Angelina Jolie, who carries the BRCA1 gene and lost her own mother to ovarian cancer at age 56, made headlines recently when she announced her decision to have a preventive double mastectomy. She went public in order to raise awareness. Making genetic testing affordable and widely available, Jolie argued, is crucial for giving women more “strong options.”
But what about diseases for which there is no effective treatment? Do you really want to know if you hold the gene for ALS or Alzheimer’s?
Fortunately, there is a cadre of professionals equipped to help us sort through these and other agonizing issues, as we describe in “To Know or Not to Know?”. Genetic counselors are critical in today’s “Wild West” landscape of genetic information sharing. And with the promise of individualized medicine on the horizon, their role on the clinical care team will become ever more crucial.
While I definitely fall into the “don’t want to know camp” when it comes to genetic testing for early Alzheimer’s, my mindset could change. And if it does, it’s some comfort to know there are genetic counseling experts ready and waiting to help.