Direct from consumers: A survey of 1,048 customers of three DTC personal

genomic testing companies about motivations, attitudes, and responses to testing

Molecular and Clinical Genetics Panel of the Medical Devices AdvisoryCommittee, March 8-9, 2011

Dave Kaufman, Ph.D.Genetics and Public Policy Center

Johns Hopkins University, Washington, DC

Work funded by NHGRI Grant 1R1HG004865-01

Several valid concerns about DTC Testing

• Validity & utility• Risks and benefits are not well understood• Misleading or unwarranted claims • May lead to purchase for the wrong reasons• Consumers may be unable to interpret data• What will people do with it?

Empirical data being collected

DTC consumers’ perspectives Survey of customers of 3 companies23andMe ($429-$499), Navigenics ($999), deCODEme ($800-$2000)

• Randomly sampled & contacted by companies• 2-8 months after receiving results• Online survey, 20 minutes, $10• January - May 2010

• 1,163 of 3,167 invited responded (37%)• 1,048 (90%) qualified

Aims of the survey

• Who is purchasing the tests?• Why?• What are their overall reactions?• Interpretation and understanding• What are they doing with the information?

Limitations

• Cross-sectional survey: no follow-up over time• No data on individuals’ specific genes or risks• Data from all three companies analyzed in

aggregate

DTC Customers (%)

US 2006-08 population 18+

(%)Age

18-34 21 3135-54 34 3855-74 42 23

75+ 4 8

Women 46 51

Household Income$0-59,999 19 58

$60,000-84,999 14 16$85,000-124,999 23 13

$125,000+ 45 15

Education Attained0-12 Years 3 45

1-4 years College 46 46Postgraduate 54 9

Race/Ethnic Group White non-Hispanic 87 65

Asian/PI (non-Hispanic) 5 4Black non-Hispanic 1 12

Hispanic 3 15AI/AN (non-Hispanic) 0.5 1

Other non-Hispanic 3.5 2

Demographics

REASONS FOR TESTING

42% were interested in specific health conditions the company tests for

Rx Response

Eye Diseases

Carrier Status for Rare Disorder

Mental Health

GI Diseases

Autoimmune Diseases

Neurological Diseases

Cardiovascular Diseases

Cancer

0 5 10 15 20 25 30 35

12

12

14

14

16

20

23

24

29

Percent interested in disease type

33% were interested in part because first-degree relative(s) “have been diagnosed with one of the medical conditions included in the service”

How important were the following when you were deciding whether or not to use the company service?

Doctor recommended it

Friend or family recommended

Wanted to try something new

Participating in genetic research

Want to know diseases less likely to develop

Learning how to improve my health

Making sure privacy protected

Access to info not avail. via healthcare

To know conditions family is at risk for

Learn about my ancestral roots*

Want to know diseases more likely to develop

Satisfy my curiosity

-100 -50 0 50 100

Not very important

Not at all

Somewhat Important

Very Important

94

91

90

88

81

79

77

76

72

68

38

7

REACTIONS TO TESTING

39 49 10

Satisfaction

“How satisfied were you with the [23andMe/deCODEme/Navigenics] service?”

VerySatisfied

Satisfied

Very Dissatisfied

(0.5)

Dissatisfied(1.5)

Neither

Men

Women

White

non-H

Black n

on-H

Hispan

icAsia

nOth

er

0 - Some Colle

ge B.A.

Postgrad

uate

$0-59K

$60-84K

$85-124K

$125K+0

10

20

30

40

50

60

70

80

90

10089

86 88 89

8184 85 85

88 88 87 89 89 89

Satisfaction across demographic groups(% who were satisfied or very satisfied)

Overall reactions to the services

I satisfied my curiosity

I feel there is nothing I cando to change my health risks

I have relief from uncertaintyabout some aspects ofmy health

Agree 89%Disagree 11%

Agree 8%Disagree 92%

Agree 49%Disagree 51%

Clarity and value of the reports

Agree 88%Disagree 12%

Agree 38%Disagree 62%

Agree 84%Disagree 16%

92%54%

% who weresatisfied

Reports were easy tounderstand

Felt value of the data was worth the cost

Conclusions were too vague

INTERPRETING RESULTS

What participants felt they learned

Yes 58%

No 42%

Did you learn anything that you could use to

improve your health that you did not already know?

96%

76%

% who weresatisfied

Interpreting the dataParticipants were shown two hypothetical test results,using the exact format their company utilizes in its reports,and asked to interpret them

Interpreting the dataMary: 25% risk of diabetesPopulation risk: 30%

Mike: 11% risk of colorectal cancerPopulation risk : 6%

“Based on the information above, which answer best describes how Mary’s/Mike’s risk of [disease] compares to the average person’s risk?” Mary MikeMore likely to get disease 5 94Less likely to get disease 90 3Has the same risk 4 2I don’t know 2 1

Mary’s diabetes - % with incorrect answer in greenMike’s Colorectal Cancer - % with incorrect in

02468

1012141618

11

7 76

17

8

4 3 3

11

What do people do based on the data?

28% discussed results with a healthcare prof.Including: 20% with primary health care providers1% contacted a genetic counselor19% with other health care professionals

9% followed up with additional laboratory tests

16% changed medication or supplement regimens based on data

10% changed dietary supplements3% changed OTC medicines4% changed Rx, in consult with doctor0.4% changed Rx, without consulting doctor

Among those changing one or more regimens, 54% shared results w/ h.c. provider

Behavioral changes as a result -at one point in time!

34% more careful about diet0.1% less careful65% the same

14% exercise more31% “more determined to exercise”nobody exercises less or is less determined

Conclusions• Demographics of early DTC customers skewed• Curiosity about what might ail you highly

valued• Satisfaction high, though not among those

who found reports difficult

Conclusions• Some of what companies try to communicate

is understood• Whether information given is accurate or valid

is a different question• Measureable issues with interpretation

suggest reports can be improved• Behavioral changes observed

– could be positive or negative, transient or lasting– Are not the same as outcomes

• Longitudinal studies w/richer data needed

Thanks to

Juli MurphyKim KregerJoan ScottGail Javitt

Kathy HudsonStephanie Devaney

Robert GreenSara Katsanis

Survey Participants

Amy DuRossBrenna Sweeney

Joanna MountainAmy Keifer

Jeffrey GulcherJónheiður Ísleifsdóttir

Knowledge Networks

NIH

NavigenicsGPPC/JHU

23andMe

deCODEme

DukeBoston U.

Work funded by NHGRI Grant 1R1HG004865-01