Featured Research

from universities, journals, and other organizations

How patients experience direct-to-consumer genetic testing

Date:
July 16, 2013
Source:
Loyola University Health System
Summary:
Several companies sell genetic testing directly to consumers, but little research has been done on how consumers experience such tests. Now, a new study is providing insight into how a diverse sample of primary care patients experience genetic testing.

Several companies sell genetic testing directly to consumers, but little research has been done on how consumers experience such tests. The tests have raised questions about the validity and accuracy of the information provided to consumers -- especially without the involvement of a qualified health care professional.

Related Articles


Now, a study lead by a Loyola University Chicago Stritch School of Medicine researcher is providing insight into how a diverse sample of primary care patients experience genetic testing.

Lead researcher Katherine Wasson, PhD, MPH, and colleagues conducted in-depth interviews with 20 patients recruited from primary care clinics. Among the findings, published online ahead of print in the Journal of Community Genetics:

- Most participants thought results were fairly easy to understand -- with the help of a genetic counselor (provided by the study, not the testing company). But fewer than half said they might be able to understand results on their own.

- Most participants expressed no concern or hesitation about testing. But a few worried about confidentiality -- especially whether results could affect their health insurance coverage. A few also expressed fears about getting bad results. As one participant explained, "I mean, you want to know, but then you don't want to know."

- Participants gave several reasons why they decided to undergo testing. Most simply said they were curious. "I don't have a scientific background, so a lot of it is just fascinating to see how all of that can spin out," one participant said. Many also said test results would provide knowledge they could act on, and help them prepare for the future. Said one: "If you know that there's something going on you can go ahead and fix it now and not have to try to fix it later when it's already unfixable." A few participants wanted to help their families or the next generation, or more broadly, contribute to research and medical science.

- Most participants were pleased with results of the tests, mainly because they had not received bad news, despite the uncertainty of the results. "This makes me feel great," said one such participant. "I know I'll be around at least another year or two."

- About half the participants said they had made no changes in response to results, mainly because there was nothing on which to act. But among a few participants, receiving "low-risk" results was a motivating factor to improve their health behavior, mainly through more exercise and a better diet.

- One year after testing, most participants said they would take the test again, and recommend it to others. "It's as if you stepped into a time capsule and you went ahead in time and you can see something," one participant said.

Patients were interviewed individually four times: during an initial session in which a saliva sample was given; 4 to 6 weeks later, when they received results; 3 months after receiving results; and 12 months after receiving results. All interviews were recorded and transcribed verbatim.

The patients ranged in age from 29 to 63; the average age was 49.5. Sixty percent were female, 50 percent were white and 50 percent were African American. Thirty percent were high school graduates, 40 percent had some college, 25 percent were college graduates and 5 percent were postgraduates.

Researchers concluded: "This longitudinal, qualitative study adds more in-depth information to the emerging data on participants' decision-making process about, experience of and reactions to direct-to-consumer testing over time. . . It is possible that our findings could be relevant to more general consumers with similar demographics, though further investigation is needed."

Companies such as 23andMe and Navigenics test consumers' genomes for single-gene disorders such as cystic fibrosis; for risks of developing complex disorders involving multiple genes, such as cancer, heart disease and diabetes; for sensitivities to drugs such as Coumadin; and for traits such as hair color, eye color and baldness. Costs range from roughly $100 to $1,500. Consumers can order these tests directly and receive results without the involvement of a qualified health-care professional, such as a geneticist or genetic counselor.


Story Source:

The above story is based on materials provided by Loyola University Health System. Note: Materials may be edited for content and length.


Journal Reference:

  1. Katherine Wasson, Tonya Nashay Sanders, Nancy S. Hogan, Sara Cherny, Kathy J. Helzlsouer. Primary care patients’ views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study. Journal of Community Genetics, 2013; DOI: 10.1007/s12687-013-0156-y

Cite This Page:

Loyola University Health System. "How patients experience direct-to-consumer genetic testing." ScienceDaily. ScienceDaily, 16 July 2013. <www.sciencedaily.com/releases/2013/07/130716120106.htm>.
Loyola University Health System. (2013, July 16). How patients experience direct-to-consumer genetic testing. ScienceDaily. Retrieved November 23, 2014 from www.sciencedaily.com/releases/2013/07/130716120106.htm
Loyola University Health System. "How patients experience direct-to-consumer genetic testing." ScienceDaily. www.sciencedaily.com/releases/2013/07/130716120106.htm (accessed November 23, 2014).

Share This


More From ScienceDaily



More Health & Medicine News

Sunday, November 23, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

Ebola-Hit Sierra Leone's Late Cocoa Leaves Bitter Taste

Ebola-Hit Sierra Leone's Late Cocoa Leaves Bitter Taste

AFP (Nov. 23, 2014) The arable district of Kenema in Sierra Leone -- at the centre of the Ebola outbreak in May -- has been under quarantine for three months as the cocoa harvest comes in. Duration: 01:32 Video provided by AFP
Powered by NewsLook.com
Don't Fall For Flu Shot Myths

Don't Fall For Flu Shot Myths

Newsy (Nov. 23, 2014) Misconceptions abound when it comes to your annual flu shot. Medical experts say most people older than 6 months should get the shot. Video provided by Newsy
Powered by NewsLook.com
WFP: Ebola Risks Heightened Among Women Throughout Africa

WFP: Ebola Risks Heightened Among Women Throughout Africa

AFP (Nov. 21, 2014) Having children has always been a frightening prospect in Sierra Leone, the world's most dangerous place to give birth, but Ebola has presented an alarming new threat for expectant mothers. Duration: 00:37 Video provided by AFP
Powered by NewsLook.com
Could Your Genes Be The Reason You're Single?

Could Your Genes Be The Reason You're Single?

Newsy (Nov. 21, 2014) Researchers in Beijing discovered a gene called 5-HTA1, and carriers are reportedly 20 percent more likely to be single. Video provided by Newsy
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:

Strange & Offbeat Stories


Health & Medicine

Mind & Brain

Living & Well

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile: iPhone Android Web
Follow: Facebook Twitter Google+
Subscribe: RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins