Nav: Home

People using third-party apps to analyze personal genetic data

June 13, 2019

The burgeoning field of personal genetics appeals to people who want to learn more about themselves, their family and their propensity for diseases. More and more consumers are using services like 23andMe to learn about their genetic blueprint.

Included with most of these services is the ability for users to download their "raw" genetic data, which can be further analyzed using third-party apps. But little is known about how and why consumers are using these apps, or about a variety of potential risks associated with these apps -- such as false positives about health information or unknowingly linking a family history to an unsolved crime.

"It's the proverbial 'wild West' of genetic interpretation," said Sarah Nelson, a University of Washington research scientist in the Department of Biostatistics who recently completed her doctorate in the School of Public Health. She's the lead author of a new paper, "Third-party genetic interpretation tools: a mixed-methods study of consumer motivation and behavior," that was published today in American Journal of Human Genetics.

The team surveyed more than 1,000 people who had paid to obtain their genetic profile through a service like 23andMe or AncestryDNA. Most respondents reported that they downloaded data and went on to use a third-party application like Promethease or GEDmatch.

"We found that individuals who are initially motivated to learn about ancestry and genealogy frequently end up engaging with health interpretations of their genetic data, too. This has implications for the regulation of such testing and interpretation practices," said S. Malia Fullerton, associate professor of bioethics and humanities, UW School of Medicine, and the senior author of the paper.

The study found that nearly all consumers who took the survey (89%) download their raw data and more than half of those who downloaded also used third-party tools (56%) to research both genealogical and ancestry information on third-party sites.

But third-party interpretation is largely unregulated and there are potential risks for consumers, Nelson said. And there are unanswered questions: What did you consent to? What do you think your data is going to be used for?

It's often unclear what happens to the consumer data once it's provided to a third-party tool. There are privacy risks, and even the chance that the genetic data may help law enforcement solve crimes. Researchers worry about accuracy, data privacy, reliability and the nation's limited health resources.

False positives for health conditions can also cause emotional strain and put pressure on an already taxed health care system. People may find out about potentially serious diseases without much context or a support system.

On the other hand, third-party tools can also enable crowdsourced research and encourage people to learn about genetics.

Overall, Nelson is pleased that more people are taking an interest in genomics, but more research is needed on how people are using their information.

"We just had very little data on this," Nelson said.
-end-
Deborah J. Bowen, a UW professor of bioethics and humanities, also co-authored the paper.

For more information, contact Nelson at sarahcn@uw.edu.

University of Washington

Related Consumers Articles:

'Locally grown' broccoli looks, tastes better to consumers
In tests, consumers in upstate New York were willing to pay more for broccoli grown in New York when they knew where it came from, Cornell University researchers found.
Should patients be considered consumers?
No, and doing so can undermine efforts to promote patient-centered health care, write three Hastings Center scholars in the March issue of Health Affairs.
Consumers choose smartphones mostly because of their appearance
The more attractive the image and design of the telephone, the stronger the emotional relationship that consumers are going to have with the product, which is a clear influence on their purchasing decision.
When consumers don't want to talk about what they bought
One of the joys of shopping for many people is the opportunity to brag about their purchases to friends and others.
As consumers, how do we decide what's 'best' when it's not clear?
Imagine you are choosing between two resorts for your island vacation.
Effects of ethnocentrism on consumers
Aitor Calvo-Turrientes, winner of the prize for End-of-Degree Project in Sustainability in 2015 awarded by the Faculty of Economics and Business of the UPV/EHU-University of the Basque Country in Vitoria-Gasteiz, is the author of the paper 'The valuation and purchase of food products that combine local, regional and traditional features: The influence of consumer ethnocentrism,' published recently by the prestigious journal Food Quality and Preference.
Organic consumers mean business
Groundbreaking research from Aarhus BSS shows that organic consumers are standing fast and are buying more and more organic products following an increasingly predictable pattern.
Perfect mannequins a turnoff for some consumers
Mannequins' long legs, tiny waistlines and perfect busts can sour some shoppers on the products they're wearing, especially consumers who don't like the look of their own bodies.
What's in a name? For young Chinese consumers, it's about culture mixing
Younger, more cosmopolitan Chinese consumers tend to favor brand translations that keep both the sound and the meaning of the original name, says U. of I. business professor and branding expert Carlos J.
Why do consumers participate in 'green' programs?
From recycling to reusing hotel towels, consumers who participate in a company's 'green' program are more satisfied with its service, finds a new study co-led by a Michigan State University researcher.
More Consumers News and Consumers Current Events

Trending Science News

Current Coronavirus (COVID-19) News

Top Science Podcasts

We have hand picked the top science podcasts of 2020.
Now Playing: TED Radio Hour

Listen Again: Reinvention
Change is hard, but it's also an opportunity to discover and reimagine what you thought you knew. From our economy, to music, to even ourselves–this hour TED speakers explore the power of reinvention. Guests include OK Go lead singer Damian Kulash Jr., former college gymnastics coach Valorie Kondos Field, Stockton Mayor Michael Tubbs, and entrepreneur Nick Hanauer.
Now Playing: Science for the People

#562 Superbug to Bedside
By now we're all good and scared about antibiotic resistance, one of the many things coming to get us all. But there's good news, sort of. News antibiotics are coming out! How do they get tested? What does that kind of a trial look like and how does it happen? Host Bethany Brookeshire talks with Matt McCarthy, author of "Superbugs: The Race to Stop an Epidemic", about the ins and outs of testing a new antibiotic in the hospital.
Now Playing: Radiolab

Dispatch 6: Strange Times
Covid has disrupted the most basic routines of our days and nights. But in the middle of a conversation about how to fight the virus, we find a place impervious to the stalled plans and frenetic demands of the outside world. It's a very different kind of front line, where urgent work means moving slow, and time is marked out in tiny pre-planned steps. Then, on a walk through the woods, we consider how the tempo of our lives affects our minds and discover how the beats of biology shape our bodies. This episode was produced with help from Molly Webster and Tracie Hunte. Support Radiolab today at Radiolab.org/donate.