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

Jun 1, 2018
Originally published on June 3, 2018 8:23 am

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.

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 2018 NPR. To see more, visit http://www.npr.org/.

LULU GARCIA-NAVARRO, HOST:

More people are getting their genes tested both in the doctor's office and through direct-to-consumer companies like 23andMe and ancestry.com. NPR's latest poll with Truven Analytics shows that curiosity about genealogy is a top reason people are buying these genetic testing kits. Health editor Scott Hensley of NPR's Shots blog joins us now to talk about the latest findings. Hey.

SCOTT HENSLEY, BYLINE: Hi, Lulu.

GARCIA-NAVARRO: So tell me what this poll is all about.

HENSLEY: We were curious to ask people across the country what they thought about genetic testing, if they'd considered it and, if so, what their experience had been with it.

GARCIA-NAVARRO: All right. And what did you find?

HENSLEY: We found that about a little less than a third, 29 percent or so, of people had said, yes, they or a family member had considered genetic testing, either of the type that's direct-to-consumer or a test that's done in a doctor's office.

GARCIA-NAVARRO: As I mentioned, the majority of people who are buying these test kits are doing it because they want to know where they come from, who their ancestors were, if they're really Irish or Greek or whatever else.

HENSLEY: Right. That's the case for the direct-to-consumer tests or the type from 23andMe and ancestry.com. For the tests in the doctor's office, the main reason was to help with some sort of diagnosis.

GARCIA-NAVARRO: OK, so medical reasons, right?

HENSLEY: Yeah.

GARCIA-NAVARRO: To see if you might have a predisposition for cancer or other genetic diseases.

HENSLEY: Right.

GARCIA-NAVARRO: OK. What about privacy concerns?

HENSLEY: Well, about half of people said that they did have privacy concerns. We further asked them, well, would you be willing to share the data with people? That was sort of a way we peeled back that question a little bit more. And people were comfortable sharing information with doctors, relatives, even health researchers. But they drew the line at employers. And that's an area where there has been a lot of concern and legislation and regulation. So I think people are mindful - with good reason - of what could be done with this data in a way that might not help me.

GARCIA-NAVARRO: So what can these tests really tell us about our health and our genes? I mean, were people aware of that?

HENSLEY: In the tests that you get in the doctor's office, they can be very specific - screening for a newborn's inherited diseases, perhaps, or, in the case of cancer, figuring out whether a drug might work for you.

GARCIA-NAVARRO: May I ask you why you decided to do this survey? I mean, what was it about this that seemed important?

HENSLEY: This is now becoming a mass-market product. You know, you're seeing it in ads alongside soap and, you know, any other service or product that you might want. And in the first quarter of this year alone, 23andMe spent $28 million on advertising for their tests, which is twice as much as they spent in all of 2016. And even now there are ads offering a discount on the 23andMe test for Father's Day. Give it as a gift. We were just really trying to figure out a little bit more about the experience that people had, what their concerns were, also what they thought it might do for them.

GARCIA-NAVARRO: Because ultimately, it's not soap - it's your genes and some very privileged information about the essence of who you are.

HENSLEY: That is exactly right.

GARCIA-NAVARRO: All right. Scott Hensley is a health editor at NPR who runs the Shots blog. Thank you so much.

HENSLEY: You bet.

(SOUNDBITE OF UNCLE TUPELO'S "SANDUSKY") Transcript provided by NPR, Copyright NPR.