NUMBER 24

Public Awareness of Direct-toConsumer Genetic Tests

Genetic tests are tests on blood, tissue, and other specimens 

to detect the presence or absence of genes that may be 

associated with health. These tests are used for a variety 

of reasons, including testing for genetic diseases in unborn 

babies, assessing whether individuals carry a gene for a 

specific disease that may affect their own risk for a disease 

and that they may pass onto their children, and testing for 

genetic diseases before symptoms are present. Some genetic 

tests are relevant to the treatment of diseases, including 

cancer. Genetic tests have traditionally been available only 

through health care professionals, wherein a clinician, such 

as a physician, genetic counselor, or nurse would deliver and 

interpret the test results for patients. However, significant 

genetic discoveries coupled with dramatic technological 

innovations over the past decade have substantially expanded 

the availability of health-related genetic tests.

Many genetic tests are marketed directly to consumers through 

paid advertisements on television, radio, or the Internet. These 

direct-to-consumer genetic tests have become widely available, 

allowing consumers to purchase a range of genetic tests, often 

without the involvement of a health care professional.

The direct marketing and availability of genetic tests with health 

implications has been controversial. While advocates assert that 

individuals have the right to access their genetic information 

without going through a health care setting, opponents assert 

that direct-to-consumer genetic testing poses considerable 

risks to individuals and to the health care system. Risks include 

fear or anxiety for the individuals who receive the results 

of their genetic test without the assistance of a health care 

professional to interpret them, or requests for unnecessary or 

invasive testing that may lead to increased patient burden and 

health care costs. Uncertainty and controversy about the risks 

and benefits of direct-to-consumer genetic testing underscore 

the importance of tracking public awareness of direct-toconsumer genetic testing.

Trends in Awareness of Direct-toConsumer Genetic Tests

A recently published analysis of HINTS data from 2008 and 

2011–2012 examined changes in awareness of direct-toconsumer genetic testing in the U.S. population and explored 

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factors associated with awareness, including sociodemographic 

characteristics, personal cancer history, access to health 

care, Internet use, and geographic differences. This analysis 

of HINTS data revealed growing awareness of direct-toconsumer genetic testing that is unequally distributed in the 

population. 

Awareness of Direct-to-Consumer Genetic Tests: 

2008–2012

While overall levels of awareness of direct-to-consumer 

genetic tests have increased over time, awareness is not 

equally distributed throughout the population. Differences 

in awareness have persisted from 2008 to 2012 and are 

patterned by age, education, geographic region, having a usual 

source of health care, and personal history of cancer. 

HINTS Question:

Genetic tests that analyze 

your DNA, diet, and lifestyle 

for potential health risks are 

currently being marketed 

by companies directly to 

consumers. Have you heard 

or read about these genetic 

tests? 0

5

10

15

20

25

30

35

40

2008

29.3

36.9

%	Aware

Survey	Year

2012

Quick Facts

Currently, approximately 2,000 genetic tests are 

available, and more are being developed. Such tests 

are increasingly directly marketed and available to 

consumers.

Public awareness of direct-to-consumer genetic tests 

increased from slightly more than 29% in 2008 to 

almost 37% in 2011 and 2012.

Awareness of direct-to-consumer genetic testing is 

higher among persons who have had prior cancer 

diagnoses and those who have usual sources of 

health care.

Data Source: Health Information National Trends Survey, 2008; 2011–2012.

In this HINTS Brief, we explore national trends over time in public awareness 

of direct-to-consumer genetic tests.
Differences in Awareness of Direct-to-Consumer Genetic Tests

Age: 

Awareness of direct-toconsumer genetic tests 

generally increased with 

age and was significantly 

higher among those 

aged 50–74 compared 

to those aged 18–34. 

For those over the age 

of 75, awareness was 

not significantly different 

than those aged 18–34. 

0

10

20

30

40

50

18-34 35-49 50-64 65-74 75+

%	Aware

Age

30.3

36.3

45.9

42.2

30.3

Education: 

A general increase in 

awareness of directto-consumer genetic 

tests was observed 

with increasing levels 

of education. Those 

with some college 

education or a college 

degree had the highest 

level of awareness.

0

10

20

30

40

50

Less	than	High	School

High	School

Some	College

College	Graduate

%	Aware

Education

21.0

30.0

36.0

48.2

Geographic Region: 

Greater awareness of direct-toconsumer genetic testing was 

observed among those living in 

urban areas compared to those 

living in rural areas. 

0

5

10

15

20

25

30

35

40

Urban	Residence

Rural	Residence

%	Aware

Geographic	Location

37.6

33.5

Health Care and 

Cancer History: 

Awareness of direct-toconsumer genetic tests 

was greater among 

those who reported 

having a regular source 

of health care than 

among those who did 

not. Higher levels of 

awareness were also 

observed among those 

with a prior cancer 

diagnosis compared 

to those who did not 

have a personal history 

of cancer. 

0

10

20

30

40

50

Usual	Source	of	Care

No	Usual	Source	of	Care

Personal	History	of	Cancer

No	Personal	History	of	Cancer

%	Aware

Usual	Source	of	Healthcare	&

Personal	History	of	Cancer

41.8

28.6

47.4

35.9

How Can This Inform Your Work?

• When genetic tests are performed in a clinical setting, a 

health care professional provides information about the 

risks and benefits of the tests and discusses the potential 

emotional and social consequences of testing, as well as any 

necessary follow-up care; this is not the case when individuals 

independently pursue genetic testing through direct-toconsumer means.

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• 

As public awareness of direct-to-consumer genetic tests 

increases, efforts to educate the population about the positive 

and negative aspects of genetic testing will be increasingly 

needed.

The National Human Genome Research Institute has 

developed a number of online and print educational resources 

to address frequently asked questions about genetic testing 

(http://www.genome.gov/19516567). 

HINTS was created to monitor changes in the rapidly evolving field of health communication. The survey data 

can be used to understand how adults use different communication channels to obtain health information for 

themselves and their loved ones. It can also help to create more effective health communication strategies 

across populations. The National Cancer Institute (NCI) fielded the first HINTS in 2002 and 2003, surveying 6,369 Americans. 

Subsequent surveys followed in 2005 (5,586 Americans surveyed) and 2008 (7,674 Americans surveyed), 2011 and 2012 (3,959 

Americans surveyed), and 2012–2013 (3,630 Americans surveyed). 

HINTS Briefs provide a snapshot of noteworthy, data-driven research findings. They introduce population-level estimates for specific 

questions in the survey and summarize significant research findings that are a result of analyzing how certain demographic characteristics 

influence specific outcomes. Many Briefs summarize research findings from recent peer-reviewed journal articles using HINTS data.

About HINTS

hints.cancer.gov

For More Information on Cancer

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Call the NCI Cancer Information Service at 1-800-4-CANCER

Visit http://cancer.gov

Order NCI publications at https://cissecure.nci.nih.gov/ncipubs/

Visit Facebook.com/cancer.gov and http://www.youtube.com/ncigov

References Used in This HINTS Brief

Finney Rutten LJ, Gollust SE, Naveed S, Moser RP. Increasing public awareness of direct-toconsumer genetic tests: Health care access, Internet use, and population density correlates. 

J Cancer Epidemiol. 2012 Jul 30.

May 2013