How to share genetic testing results - Newsday

How to share genetic testing results

advertisement | advertise on newsday

Ask Amy Amy Dickinson, Ask Amy

Amy Dickinson is a general advice columnist. ...

DEAR AMY: Genetic testing shows that my son and I are cystic fibrosis (CF) carriers. Most carriers are asymptomatic, as I am, but my son has some pulmonary issues, which is why the testing was done. I've asked my parents to be tested so we can determine which side of the family the recessive gene mutation comes from. When the results come back, I feel we have an obligation to inform that particular half of the family. If a CF carrier has a child with a CF carrier, they have a 25 percent chance, with each pregnancy, of having a child with full-blown cystic fibrosis, a debilitating and life-threatening disease. How do we gently and lovingly share this without causing unnecessary stress or drama?

Loving Family Member

DEAR FAMILY MEMBER: Laurie Fink, spokeswoman for the Cystic Fibrosis Foundation (cff.org), confirmed your take on this disease. She tells me that one in 30 Americans is a symptomless carrier of the CF gene mutation.

advertisement | advertise on newsday

In your approach with other family members, be straightforward, honest and neutral. Give them access to the same resources you used to pursue testing.

You are generous to share the results with family members. They will decide on their own whether they want to be tested.

The Cystic Fibrosis Foundation wants to spread the word that there is more hope than ever before for people with this disease. The life expectancy for a child born with CF has doubled in the past 30 years.

DEAR AMY: The letter from "Wedding Food Blues" really steamed me. I can't get over the nerve of this guest who is worried about her diet restrictions for events that won't occur for months. Weddings are not about the guests, but the couple! Steamed Peas

DEAR STEAMED: Dietary restrictions are becoming so common that I think these issues are more anticipated and less of a burden on hosts.

You also may be interested in: