That insight—that culture and identity are not DNA—is one that Dani Shapiro, author of the recently published Inheritance: A Memoir of Genealogy, Paternity, and Love, doesn’t get.
In our last issue, we wrote about genetic diseases that affect those of Jewish ancestry. We also asked our readers to share their experiences with genetic testing. They told us about the anticipation, worry and—hopefully—relief involved in the process.
In 2010, Rob Densen’s wife was diagnosed with Stage 4 lung cancer. The doctors gave her 36 weeks to live, but she lived for 40 months. “She had a genetic mutation for which there was a targeted therapy,” says Densen. “We got that time because 10 or 15 year
Tell us about your encounters with genetic testing.
Twenty five years ago, Dr. Batsheva Kerem and Dr. Eitan Kerem made a significant contribution to the scientific world’s understanding of genetic mutations and cystic fibrosis. Together—with their medical-research teams—they mapped the genetic mutation profile of cystic fibrosis among different Jewish ethnic groups in Israel. Since then, life expectancy for individuals with cystic fibrosis has shifted dramatically, thanks in part to their medical and genetic research and ongoing commitment to fighting the disease. These Israeli doctors, long married, represent two of the world’s major cystic fibrosis research centers: the Hadassah Medical Organization and Hebrew University. Today, the Kerems’ research serves as a map for the genetic counseling many Jewish couples undergo before having children.
For the Jewish community, perhaps the biggest success story in genetic testing is Tay-Sachs: The disease is carried by one in 27 Ashkenazi Jews (who come from Eastern Europe), and nearly always has been fatal. Today, among Ashkenazi Jewish populations, it has been almost entirely eradicated.
Matt Diamond is a 39-year-old financial planner whose sister happens to be an amateur genealogist. After creating a family tree for a school homework assignment, she was hooked and spent the next 25 years digging into her family’s Ashkenazi roots. In 2014, she sent a saliva sample to a genetic testing company, hoping to find more family members through their DNA database. She was shocked when the test identified her as a carrier for the BRCA2 mutation, a fact later confirmed by her medical doctor.
Michelle Wilson was dealt an unexpected hand: Her father had breast cancer. According to the American Cancer Society, the lifetime risk for men is one in 1,000. In 2006, Michelle’s father reached for his seatbelt and felt an excruciating pain through his arm and left breast. At 52, he was diagnosed with stage 3C breast cancer
I truly believe in the old adage that “knowledge is power.” When a couple finds that one or both carries a genetic mutation, this will likely change their perspective on family planning. Although this information might be hard to swallow, in my experience couples are happy that they are empowered with information that makes it possible to make sound decisions about their future.