Featured Research

Direct from Consumers: A Survey of 1,048 Customers of Three Personal Genetic Testing Companies about Motivations, Attitudes, and Responses to Testing

Date:

November 7, 2010

Source:

American Society of Human Genetics

Summary:

Currently, little is known about how people interpret and react to personalized genomic risk information for common complex conditions.  To address this knowledge gap, a group of researchers conducted interviews with individuals who received personalized genetic risk results for seven common health conditions. 

Share This

For several years, companies have been selling genetic tests which claim to predict a person's risk of developing disease.  These tests currently cover up to 174 different conditions.  Although doctors' offices have offered genetic tests for a number of these diseases for many years, these companies have made their mark by selling genetic testing services directly to consumers (or DTC), and some companies even provide tests that have not yet been adopted for routine medical practice. 

Related Articles

Concerns about the limitations, potential harms, and lack of clear benefits of these DTC tests abound.  However, very little data has been published about who is buying these tests and why, whether the tests meet customers' expectations, whether customers understand the information that is reported in their personal genetic profile, and how they are using the resulting information. 

To answer some of these important questions, a group of researchers led by David Kaufman, PhD, Director of Research and Statistics for the Genetics and Public Policy Center at Johns Hopkins University, conducted an online survey of 1,048 customers who ordered DTC genetic testing from one of three different companies -- 23andMe, deCODEme, and Navigenics -- to assess their motivations and experiences using these services.  Random samples of U.S. customers who received DTC results between June 2009 and March 2010 were invited to participate in the study.  Survey question topics included reasons for testing, attitudes about test results, and health behaviors.  Respondents were also asked to interpret two genetic test results shown using graphics and text provided by the DTC companies. 

Dr. Kaufman's team found that early adopters of personal genomic DTC tests -- who on average tended to be highly educated and have higher incomes -- indicated that they were generally satisfied with their DTC genetic testing services.  The top reasons that they cited for purchasing the tests were to satisfy their curiosity (94% said this was somewhat or very important), to assess their elevated risks of genetic diseases (91%), and to learn more about their ancestry (90% among the customers of 23andMe and deCODEme, which both offer ancestry testing).  One in three participants said that they were interested in pursuing testing because a first-degree relative was affected with a tested genetic health condition, and 42% said they were interested in learning their risk of one or more specific conditions. 

Overall, 77% of participants pursued testing to help improve their health, 58% said they learned new information that would help improve their health, and 9% felt they could not change their health risks after receiving their test results.  Three in 10 study participants indicated that they had shared their results with a doctor or had gotten a follow-up test, and another 18% said that they intended to do so at a future date.  As a result of testing, 34% of the participants said they were being more careful about their diet, 15% had changed their medication or dietary supplement regimens, and 14% were exercising more.  Long-term follow-up of DTC test users is needed to evaluate the impact of DTC testing on healthcare usage and health behavior change. 

The researchers also asked participants questions about how they viewed and interpreted the data provided their personal genetic test reports, and they found that the consumers tended to overestimate their level of understanding of their test results.  Although 88% of customers agreed that their risk report was easy to understand, 38% of the study participants indicated that the information they received from the DTC companies was too vague.  Furthermore, when customers were shown two examples of risk results provided by the companies, between 4% and 7% misinterpreted them.  The participants were also twice as likely to misinterpret a result showing a gene that protected a person from disease, as compared to a result showing a gene that increased disease risk. 

The study participants answered questions about their thoughts and opinions on federal regulation and oversight of DTC genetic tests.  Although 66% of the participants felt that these tests should be available without government oversight, more than 70% indicated that an organization such as the Federal Trade Commission (FTC) or Consumer Reports should monitor companies' claims for scientific accuracy. 

"Our research results indicate that consumers who are at the front of the line to buy direct-to-consumer genetic testing services were motivated by curiosity about their genes, though many also hoped to find out their disease risk and improve their health with the results," said Dr. Kaufman. 

"We observed that most of the DTC customers who participated in this study were generally satisfied with the personal genetic testing services that were provided, and more than half of the participants indicated that their test results helped them learn something new that could improve their health," Kaufman noted. " However, many of the study participants found the information from their genetic test reports to be vague, and one in 12 was not able to correctly interpret the sample results that we showed them, suggesting that there is room to improve the clarity of the information provided to customers in their personal genetic test result reports and the way the information is being delivered to them." 

This research was presented at the American Society of Human Genetics 60th Annual Meeting, which was held November 2-6, 2010, in Washington, D.C.

American Society of Human Genetics. " Direct from Consumers: A Survey of 1,048 Customers of Three Personal Genetic Testing Companies about Motivations, Attitudes, and Responses to Testing."  ScienceDaily.  ScienceDaily, 7 November 2010.  <www.sciencedaily.com/releases/2010/11/101107213820.htm>. 

American Society of Human Genetics. ( 2010, November 7).  Direct from Consumers: A Survey of 1,048 Customers of Three Personal Genetic Testing Companies about Motivations, Attitudes, and Responses to Testing.  ScienceDaily.  Retrieved March 3, 2015 from www.sciencedaily.com/releases/2010/11/101107213820.htm

American Society of Human Genetics. " Direct from Consumers: A Survey of 1,048 Customers of Three Personal Genetic Testing Companies about Motivations, Attitudes, and Responses to Testing."  ScienceDaily.  www.sciencedaily.com/releases/2010/11/101107213820.htm (accessed March 3, 2015). 

More From ScienceDaily

More Health & Medicine News

Featured Research

Mar. 3, 2015 — Limp or firm, your handshake conveys subliminal social cues.  Now, research reveals it also transmits chemical signals that could explain why the greeting evolved in the first ... full story

Mar. 3, 2015 — Loneliness brought about by the death of a spouse can trigger a wider network of depression-like symptoms, a study has found, but authors suggest that doctors are often too quick to attribute these ... full story

Mar. 3, 2015 — Family Based Interpersonal Psychotherapy (FB-IPT) is more effective in treating preadolescent children with depression compared to child-centered therapy (CCT), a recent study has found. ...  full story

Mar. 3, 2015 — Two of the four known groups of human AIDS viruses (HIV-1 groups O and P) have originated in western lowland gorillas, according to new research.  The scientists conducted a comprehensive survey of ... full story

Mar. 3, 2015 — Scientists have succeeded in producing cartilage formed from embryonic stem cells that could in future be used to treat the painful joint condition osteoarthritis.  With their huge capacity to ... full story

Mar. 3, 2015 — Everyone worries about losing their memory as they grow older—memory loss remains one of the most common complaints of the elderly.  But the molecular reasons behind the processes remain unclear, ... full story

Mar. 3, 2015 — A strong link has been made between subthreshold manic episodes and likelihood of developing bipolar disorder in children of parents with bipolar disorder.  The study’s findings could improve ... full story

Mar. 2, 2015 — Despite sharp increases in spending on cancer treatment, cancer mortality rates in the United States have decreased only modestly since 1970, a study has found. " Our results suggest that cancer care ... full story

Mar. 2, 2015 — In the first study of its kind since the 1920s, rats in New York City were found to carry a flea species capable of transmitting plague pathogens.  Among them: 500-plus Oriental rat fleas, notorious ... full story

Mar. 2, 2015 — A newly published study is the first to report an association between bisphenol-A (BPA), a common plasticizer used in a variety of consumer food and beverage containers, with autism spectrum disorder ... full story

Featured Videos

Mom Triumphs Over Tragedy, Helps Other Families

AP (Mar. 3, 2015) — After her son, Dax, died from a rare form of leukemia, Julie Locke decided to give back to the doctors at St. Jude Children&apos;s Research Hospital who tried to save his life.  She raised $1.6M to help other patients and their families. ( March 3)
Video provided by AP

Woman Convicted of Poisoning Son

AP (Mar. 3, 2015) — A woman who blogged for years about her son&apos;s constant health woes was convicted Monday of poisoning him to death by force-feeding heavy concentrations of sodium through his stomach tube. ( March 3)
Video provided by AP

Related Stories

Dec. 4, 2014 — New parents' attitudes toward newborn genomic testing has been the focus of a new study, which finds that if newborn genomic testing becomes available, there would be robust interest among new ... full story

Nov. 5, 2010 — Family health history information is a useful and accurate tool for assessing an individual's risk of developing various diseases.  Family health history charts -- known as pedigrees -- are also ... full story

Oct. 3, 2010 — Awareness of genetic testing was higher among adults in Puerto Rico compared to previous US population-based studies, while use of genetic testing was lower, according to new ... full story

ScienceDaily features breaking news and videos about the latest discoveries in health, technology, the environment, and more -- from major news services and leading universities, scientific journals, and research organizations.