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POLL: Genealogical Curiosity Is A Top Reason For DNA Tests; Privacy A Concern

A sample of saliva can unlock details about a person's genetic makeup.
Andrew Brookes
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Cultura RF/Getty Images
A sample of saliva can unlock details about a person's genetic makeup.

My mom is old-fashioned, so I got her flowers for Mother's Day. But there was no shortage of promotion for an alternative gift — a genetic test.

23andMe ran TV ads that urged people to "Celebrate Your Mom" by giving her a genetic test for Mother's Day. Better yet, take a test together, an ad suggested. Twenty percent off just for the occasion.

23andMe spent $27.9 million on advertising in the first quarter of 2018, according to tracking firm Kantar Media. The 23andMe spots this Mother's Day followed a similar campaign a year ago that also offered a testing discount.

/ Kantar Media
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Kantar Media

Genetic testing for people curious about their ancestry and health has become a mass-market product complete with mass-market advertising. (23andMe provides financial support to NPR.)

Beyond the tests that anyone can buy, there is a growing array of genetic tests ordered by doctors — from assays for breast cancer risk to detailed screening of newborns for inherited diseases. Geisinger Health System, based in Pennsylvania, even plans to begin routinely sequencing patients' DNA for a range of genetic mutations with potential health consequences.

With the rise of genetic testing, we asked Americans about their attitudes toward it and experiences with it in the latest NPR-Truven Health Analytics Health Poll. The survey of more than 3,000 households conducted in December followed up on questions we asked in early 2016.

First off, we found that 29 percent of respondents said they or family members had considered getting a genetic test, a 5-percentage-point increase from 2016, although the uptick wasn't statistically significant, according to Truven Health, a unit of IBM Watson Health.

The people most interested in the idea are younger than 35. The poll found that 43 percent of them said they had considered genetic testing, a 10-percentage-point increase from 2016.

The proportion of interested people who said they or a family member had ever ordered a direct-to-consumer test was 32 percent. Thirty-four percent of people who said they or a family member had considered a test and got one did it through a doctor.

When we asked why people had gotten a direct-to-consumer genetic test, the most common response — 30 percent — was ancestry or genealogy. Among people 65 and older, 74 percent said ancestry or genealogy was the reason. For people who got a test through a doctor, the most common reason was to help with a diagnosis — 31 percent.

"We have had this big push toward precision medicine and personalized medicine happening, but there's still quite a bit of confusion about what it means to have a genetic test," said Dr. Anil Jain, vice president and chief health information officer at IBM Watson Health. "Strikingly, the most common reason to get a genetic test is genealogy or ancestry."

Doctors now check genetic markers for patients going on expensive medications, he said. There are also genetic tests related to how a person's body processes drugs that doctors can use to adjust doses for medicines like blood thinners. In cancer, DNA testing of tumors is commonplace.

"Patient may not see it as a genetic test," Jain said. "In many ways the survey reflects the state of affairs in the play between precision medicine ... and the fact that there is consumer-facing genetic testing ... powered by Ancestry.com and 23andMe."

We were also curious how people felt about the confidentiality of their genetic information. About half — 47 percent — of people who'd had a test or whose family member had undergone one said they had privacy concerns. A solid majority were willing to share genetic test information with doctors, relatives and health care researchers. A minority — 39 percent — were willing to share the information with employers.

The nationwide poll has an overall margin of error of plus or minus 1.8 percentage points. You can find the questions and full results here.

Copyright 2020 NPR. To see more, visit https://www.npr.org.

Scott Hensley edits stories about health, biomedical research and pharmaceuticals for NPR's Science desk. During the COVID-19 pandemic, he has led the desk's reporting on the development of vaccines against the coronavirus.