To Test or Not to Test?

Genetic testing … it’s a huge, complicated, and slightly scary subject. If you could, would you want to know what secrets are hiding in your DNA? Have you even considered it?

Prenatal genetic testing has become pretty commonplace. Many moms face the question of whether to have amniocentesis or CVS (chorionic villus sampling, another technique that gives similar results) during pregnancy.

Current recommendations suggest testing for women over age 35, or those who have a family or pregnancy history that raises concern. The tests can reveal chromosomal abnormalities, like Down syndrome, and a growing number of gene mutations causing conditions that include cystic fibrosis and sickle cell disease. This testing gives lots of information about the fetus, but more and more parents are not sure they want to know. Here’s one family’s compelling story of doubt.

But what about Mom? Prenatal testing will give a good picture of how Mom and Dad’s genetic ingredients combined to shape the new recipe (baby), but it won’t tell you which genes came from whom, or give specific information about each parent’s own health risks.

Until recently, this kind of information was only available from advanced genetics labs looking for specific gene mutations. Now, commercial companies offering home genetic testing directly to consumers have changed all that.

You can order an at-home test kit from one of several companies (with a significant price-tag), spit into a small vial, mail it back, and voila! 6 – 8 weeks later a report arrives detailing your very own genetic profile and health risks. It will provide a customized list of gene variants that may or may not affect your future health, and may or may not affect the health of your kids.

But what will you do with the knowledge? What does it mean? And is it even accurate? These are questions being asked by the FDA (Food and Drug Administration), which has issued an official caution to these companies, and retail outlets like Walgreens have halted sales of the kits until further notice.

Would you want to know? Both of us were curious, so we sent away for the kits when one of these companies — 23andMe — offered a one-day reduced price. Read the story that appeared on CNN.com about Rachel’s experience here.

The results aren’t in yet, but stay tuned for our full story in coming weeks. In the meantime, consider how you feel about this. Knowing your own genetic profile can have repercussions that might not immediately come to mind.

It could create anxiety about things you have no control over that may never cause a health problem, or lead you to learn about a high risk condition that has no treatment.  It may cause worry about the future health of your children. On the other hand, it could prompt you to alter your lifestyle habits and quit smoking, eat better or exercise more.

Would you do it? Why or why not? What would you hope to learn? Would it change your attitude towards your health? Your children’s health?

Mamas want to know!

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Ellen and Rachel are two old friends and “expert” mamas—one a pediatrician and one a family therapist—with fifty years of parenting experience between them.

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