A representative survey of 1,001 Americans released today by the Personalized Medicine Coalition (PMC) and GenomeWeb shows that most Americans are not familiar with personalized medicine, an evolving approach to medicine that can make the health system more efficient and effective.

1. Public Perspectives
on Personalized
Medicine
National survey of U.S. adults
May 2018
Survey conducted by
Survey conducted for

2. Table of Contents
Background 3
Objectives and Methodology 4
Executive Summary 5
Key Findings 6
Detailed Findings 10
Awareness of and Interest in Personalized Medicine 11
Excitement and Worry around Personalized Medicine 24
Experiences with and Perceptions of Genetic Testing 35
Attitudes around Genetic Testing Public Policies 43
Appendix 47
2

3. BACKGROUND
Objectives and Methodology

4. Research Objectives and Method
Objectives
The survey objectives were to:
• Gauge public awareness of and familiarity
with personalized and precision medicine
and related topics;
• Measure public experiences related to
personalized medicine in clinical settings;
• Gauge public interest in and questions
about personalized medicine;
• Measure public receptivity to personalized
medicine, including perceived benefits and
concerns; and
• Assess any changes in awareness or
attitudes compared to PMC’s benchmark
research conducted in March 2014.
4
Method
• KRC Research conducted a 20-minute
national survey of 1,001 U.S. adults 18
years and older.
• The survey was administered online from
February 23 to March 2, 2018.
• The sample for the survey was randomly
drawn from a large national Survey
Sampling panel of U.S. adults.
• KRC established demographic quotas
(region, sex, age, education, and
race/ethnicity) and weighted data to ensure
the sample is demographically
representative of the U.S. population based
on Census data.
While personalized medicine’s potential is well-recognized by many medical experts, a
survey commissioned by PMC in 2014 showed limited public awareness of the field. Since
then, the U.S. government has made personalized medicine a national priority through its
All of Us Research Program.

5. EXECUTIVE SUMMARY
Key Findings

6. Key Findings: Awareness of personalized medicine
remains low, but interest is on the rise.
6
• Awareness of personalized medicine remains low.
- Similarly to 2014, just over a third of Americans have heard of personalized
medicine, with just 1 in 4 confirming that a description of personalized medicine
aligned with what they heard.
- Those who pay close attention to health news and policy are most aware, but
even among this group awareness is fewer than half.
- Of those who say they are aware, most aren’t able to provide many details.
• The concept of personalized medicine elicits very positive reactions.
- After reading a brief description of personalized medicine, two-thirds of
Americans have a positive reaction, saying that they can see the benefits it will
have to society and to them personally. The remainder are neutral, because they
do not know enough to say.
• Since 2014, interest in personalized medicine has grown dramatically.
- Over eight in 10 would like to learn more about personalized medicine, up 13
percentage points since 2014.
- How personalized medicine can be used to treat cancer is the number one thing
people would like to learn about.

7. Key Findings: Excitement and value outweigh concerns.
7
• The possibility of disease prevention and detection excites people
most.
- Six in 10 say these benefits are very exciting.
• Reducing trial-and-error medicine is seen as the biggest benefit.
- Seven in 10 say this is a major benefit.
- Those who have witnessed a life-threatening illness see the most benefit from
personalized medicine.
• Most don’t have pre-established concerns about personalized
medicine.
- Top-of-mind concerns involve questions about safety, side effects, and reliability.
• When shown potential concerns, the biggest fear is that personalized
medicine will not be covered by insurers and people won’t be able to
afford it.
- Those in poor health and/or those who have personal experience with life
threatening illnesses are most concerned about coverage.
• Most believe that insurance companies should cover personalized
medicine.

8. Key Findings: Most do not have personal experience with
personalized medicine, but most are willing to use it.
8
• Americans are likely to use personalized medicine if their doctor
recommends it, but they have questions.
- Over 8 in 10 adults would be likely to use personalized medicine for developing a
specific treatment plan for a disease they already have, treating a disease
informed by a genetic test, or to prevent illness, provided their doctor
recommended it.
- Adults mostly want to know how personalized medicine works, what side effects
there are, if it is effective, and what the costs are.
• Very few are discussing genetic testing, have ever heard of or spoken
to a genetic counselor, or have purchased an at-home DNA test to
check for their risk of developing certain diseases.
- Only one in 10 say their doctor has talked with them or recommended genetic
testing. Those who have gotten a genetic test did so to prevent disease, predict if
a specific medicine would help treat a disease, or predict the likelihood of getting
a disease.
- Only about 1 in 5 have heard of genetic counseling, and of those a quarter have
spoken to a genetic counselor.
- Even fewer (6%) have purchased an at-home DNA test to check for the risk of

9. Key Findings: When it comes to policy, Americans want
more information made available and lower costs.
9
• Awareness of the Genetic Information Nondiscrimination Act (GINA) is low,
but Americans are likely to feel more comfortable as opposed to less
comfortable with genetic testing after learning about it.
- More than 8 in 10 are unaware of GINA, but after learning about it, nearly one-third
feel more comfortable with genetic testing (only one in 10 feel less comfortable).
• Additionally, few adults are aware of the All of Us Research Program.
- Less than one in 10 are aware of the All of Us Research Program.
• Most do not want increased out-of-pocket costs or government or insurance
company control of who is able to access personalized medicine.
- Increased government or insurance company control over who gets covered and
who doesn’t — as well as higher out-of-pocket costs to cover personalized tests —
are mostly viewed as unacceptable.

10. DETAILED FINDINGS

11. 11
Awareness of and Interest in Personalized Medicine

12. 21%
52%
22%
6%
Very closely
Somewhat closely
Not too closely
Not at all closely
Follow health news and latest developments in medicine
Q7. How closely do you follow news about health, health care, and the latest developments in medicine? 12
Most Americans say they follow developments in health,
health care, and medicine.
Most U.S. adults (73%) say they follow developments in health and medicine. One out of
five (21%) follow very closely.
73%

13. Q8. Thinking about everything you have seen, heard and read lately, what medical advances or tools on the horizon have the
most potential to positively change health care? 13
What people have heard about medical advances or
tools with potential to positively change health care
Advances in treatment of diseases 31%
Cancer cures, advances and/or treatment 15%
Stem cell research to treat diseases 4%
Flu treatment or shots 4%
New treatment/new medications/vaccines (non-specific) 3%
Disease treatment (non-specific) 2%
HIV/AIDS treatments 2%
Advances in technology and diagnostics 16%
Technology in medicine (non-specific) 6%
Artificial intelligence/robots/robot surgery 5%
Genetics 3%
DNA and genetic testing 2%
Personalized medicine (3 people mentioned) <1%
Other mentions 11%
Advancements in medicine (general) 5%
Alternate medicine/eating right/diet 3%
Medical marijuana 2%
Research is increasing (non-specific) 2%
Cost/insurance 6%
Affordable health care/lowering the cost of health care 4%
Obamacare/elimination of Obamacare 2%
Other 3%
Yet, personalized medicine is not yet top-of-mind.
Unaided, only 3 people mentioned it.
“Possible cures and
inroads to curing
cancer using
targeting therapies.”
“Robotics. The ability
to utilize robots to
perform medical
procedures.”
“I think that stem cell
research and gene
therapy show the
greatest promise and
potential to help
many, many people.”

14. 14
Q9. Which of the following words or terms have you heard or read something about prior to today? Please select all that apply. *NOTE: In 2014, prior to
the start of the All of Us Research Program, respondents were only asked about personalized medicine, but not about precision medicine. In 2018, they
were asked about both because both terms are now used interchangeably.
When asked specifically, 1 in 3 said they have heard of
either personalized or precision medicine, or both.
More have heard the term personalized medicine (29%) than precision medicine (15%).
There has been little change in awareness since the previous survey conducted in 2014,
when we measured 38% aware.*
61%
58%
54%
38%
38%
29%
27%
24%
23%
22%
17%
16%
15%
5%
5%
15%
Genetic test
Genetics
Diagnostic test
Gene therapy
Immunotherapy
Personalized medicine
Targeted therapy
Individualized medicine
Biomarkers
Gene editing
Genomics
Whole genome sequencing
Precision medicine
CAR-T therapy
CRISPR
None of the above
Heard or Read Something About...
Heard the term
personalized
medicine and/or
precision medicine:
34% (Net)

15. Q10. [IF HEARD OR READ SOMETHING ABOUT PERSONALIZED OR PRECISION MEDICINE] What have you seen, heard or read about
personalized medicine, sometimes referred to as precision medicine? 15
What have you seen, heard or read about personalized / precision medicine?
(unaided question)
n=344
Individualized treatment 38%
Targeted treatment; medicine tailored to treat your specific disease/need 16%
Individualized treatment; treating an individual person 15%
Genetic treatment/therapies based on your genes/based on genetics 10%
Treatment based on lifestyle 1%
Can target specific areas of body to prevent disease 1%
Other general comments 28%
Heard of it; have heard the term (general) 16%
Good medicine; better medicine (non-specific) 4%
Becoming more popular, on the upward swing/on the increase 3%
More effective; it works good 3%
Used for cancer treatment; for cancer patients 2%
Not sure 34%
Among those who have heard about personalized
medicine, nearly a third cannot describe it.
“An emerging approach for disease treatment and
prevention that takes into account individual variability in
genes, environment, and lifestyle for each person and
differs from person to person according to their particular
requirements and pre existing conditions.”
“Advances in determining what the gene
markers in DNA mean for health issues allows
for individualized treatments possibly even
down to resolving issues before they occur.”

16. Q11. [IF HEARD OR READ SOMETHING ABOUT PERSONALIZED OR PRECISION MEDICINE] Does this description match with what
you thought personalized medicine or precision medicine was, or is this something different from what you had in mind? 16
Personalized medicine, sometimes
referred to as precision medicine, is
an emerging field that uses
diagnostic tools to identify specific
biological markers, often genetic, to
help determine which medical
treatments and procedures will be
best for each patient. By combining
this information with an individual's
medical records and
circumstances, personalized
medicine allows doctors and
patients to develop targeted
prevention and treatment plans.
The goal is to provide the right
treatment in the right dose to the
right patient at the right time.
76% matches what
I thought
18%
Different
6% not
sure
n=344 heard of
personalized or
precision medicine
When those who heard of personalized medicine are shown a
description, 3 in 4 confirm it is what they thought. Therefore, about 1
in 4 confirm they have heard about personalized medicine.
Does this description match with what you thought
personalized or precision medicine was, or is this
something different from what you had in mind?
26%
of total

17. 9% 13% 11%
38%
51%
38%
40%
32%
32%
13%
5%
16%
All adults Heard of PM (n=344) All adults 2014
Not informed at all
Not too informed
Somewhat informed
Very informed
Q14. How well informed do you feel about personalized medicine?
17
Total
not
informed
53%
Total
informed
47%
37%
63%
In fact, only about 10% feel informed about
personalized medicine. Most say they do not feel
informed.
Of all adults, just over half say they don’t feel informed about personalized medicine.
Those who were familiar with it prior to the survey are more likely to feel somewhat or
very informed. This is in line with what was seen in 2014.
48%
49%

18. Q12. What is your reaction to the description of personalized medicine?
* 2014 description was slightly different: Personalized medicine is an emerging field that uses diagnostic tools to identify specific biological markers,
often genetic, to help determine which medical treatments and procedures will be best for each patient. By combining this information with an
individual’s medical records and circumstances, personalized medicine allows doctors and patients to develop targeted prevention and treatment
plans. The goal is to provide the right treatment in the right dose to the right patient at the right time.
18
67%
mostly
positive
1%
negative
32%
neutral
Reaction to Description of Personalized Medicine
Two-thirds have a mostly positive reaction when they read
the description about personalized medicine.
When shown the PMC description of personalized medicine (shown on page 15), most
said they felt mostly positive about it. Nearly a third felt neutral, and only 1% felt negative.
This reaction is unchanged from 2014.*
2014 results %
Mostly positive 65
Neutral 28
Mostly negative 2
Don’t know/ref. 5

19. Q13. What are your reasons for that reaction? Please explain as clearly as possible.
19
Reasons for Positive Reactions about Personalized Medicine
Personal appeal 41%
Positive/feel positive about it/sounds good (general) 20%
Helpful/helps people (non-specific) 11%
Better treatment/more efficient 5%
Advanced treatment/advances in medicine/innovative 3%
Makes sense/accurate 2%
Individualized treatment 31%
Individual approach/determines what is best for individual patient/personalized (non-specific) 12%
Everyone is different/bodies react differently 6%
Right medication/give patient the exact medicine needed 5%
Targeted/targeted treatment 4%
Preventing health problems/prevent illness 3%
Genetic testing to target problems/genetic testing to find the right treatment 3%
Positive feelings about personalized medicine relate to
the appeal of an individualized approach.
“This description pinpoints
exactly how to treat a specific
diagnosis of a patient, leading
to more efficient outcomes in
less time.”
“I believe it will help by taking out a lot
of the guesswork doctors do now. A lot
of people have to go back to the doctor
repeatedly for new prescriptions until
they find one that works.”
“All bodies are
different and one
person's cure may
not work for the
next.”

20. * Percent based on all responses, not only neutral comments.
Q13. What are your reasons for that reaction? Please explain as clearly as possible.
20
Reasons for Neutral or Negative Reactions to Personalized Medicine
General neutral mentions 16%*
Don't know enough about it/don't understand it/need more information 9%
Might have some flaws/could have some issues/might work for some and not for others 2%
Indifferent/don't care either way 2%
Not proven/needs to be tested 1%
That's how I feel (non-specific) 1%
Skeptical/sounds far fetched 1%
Personal concerns 3%
Not safe/unnatural/don't trust the medical system 2%
Expensive/will run up costs 1%
Doesn't make sense/confusing 1%
Neutral reactions stem from feeling inadequately informed
or wanting to know more. A few worry about safety.
“I don't know enough about
it to make an informed
judgement.”
“It sounds good, but
who knows until it is
tested.”
“Sounds great
but expensive.”

21. 32%
23%
49%
46%
14%
18%
4%
9%
4%
2018 2014
DK/ref.
Not interested at all
Not too interested
Somewhat
interested
Very interested
Q15. How interested are you in learning more about how personalized medicine can be used? 21
Total
not interested
18%
Total
interested
82%
Interest in personalized medicine is very high—and has
grown 13 percentage points since 2014.
Over eight in 10 American adults say they are interested in learning more about
personalized medicine, up from seven in 10 in 2014.
27%
69%
13
point
increase

22. 67%
60%
59%
55%
49%
49%
48%
23%
28%
28%
31%
36%
31%
31%
4%
5%
7%
7%
8%
12%
11%
3%
3%
3%
4%
3%
5%
6%
3%
3%
3%
3%
3%
3%
4%
Treating cancer
Preventing diseases/disorders
Treating cardiovascular or heart disease
Treating inherited disorders/diseases
Treating infections
Treating psychiatric or neurological disorders
Screening parents who may be at risk of passing an
inherited disorder/disease to their children
Learning more about how personalized medicine can be used
Very interested Somewhat interested Not very interested Not interested at all Not sure
Q32-38. How interested are you in learning more about how personalized medicine can be used in the following areas? 22
Total
interested
90%
88%
88%
86%
86%
80%
79%
There is interest in learning more about personalized
medicine applications across disease states.
The most intense interest related to how personalized medicine can be used to treat
cancer and prevent diseases.

23. 23
Total very
interested
Men Women
Age
18-34
Age
35-64
Age
65+
Treating cancer 67% 64% 69% 68% 65% 70%
Preventing diseases/disorders 60% 57% 63% 63% 60% 55%
Treating cardiovascular or heart
disease
59% 56% 62% 57% 58% 65%
Treating inherited
disorders/diseases
55% 51% 59% 61% 55% 47%
Treating infections 49% 46% 52% 49% 51% 46%
Treating psychiatric or neurological
disorders
49% 41% 56% 57% 48% 35%
Screening parents who may be at
risk of passing an inherited
disorder/disease to their children
48% 43% 53% 57% 46% 39%
* Highlighted cell indicates statistically significant difference between categories.
Q32-38. How interested are you in learning more about how personalized medicine can be used in the following areas?
Interests vary somewhat by gender and age.
Women show more intense interest than men in learning about the specific uses of
personalized medicine. Those age 65+ are most interested in how it can treat heart
disease, whereas those 18-34 want to learn more about applications related to inherited
and psychiatric disorders.

24. 24
Excitement and Worry around Personalized
Medicine

25. Q22. Is there anything about personalized medicine that you find particularly exciting or beneficial? What — and for what reasons — do you
find that exciting or beneficial? 25
What is exciting or beneficial about personalized medicine?
Individualized treatment 31%
Treatment that would be best suited for me; the right treatment, no trial and error 14%
Preventive medicine—the ability to prevent, diagnose before onset of disease 9%
Genetic testing/testing for specific disease that runs in my family 6%
Targeted therapy/targeted treatment 3%
Individualized treatment/aimed at the individual 3%
Effectiveness 17%
More effective and better treatments that work better 7%
Better health/healthier, will feel better 5%
Cures for diseases 3%
Live better, live longer 3%
Other 14%
All of it—everything sounds beneficial (general) 6%
Helpful/helps people (non-specific) 3%
New approach/new treatment 3%
Less side effects/decrease in side effects 1%
Affordable health care/lowering the cost of health care 1%
Not sure 40%
Top-of-mind excitement about personalized medicine
centers around individualized treatment and its potential to
be more effective than current treatment approaches.
“I think it’s
developing
medicine to a
new level and
serious
illnesses would
be combatted
in a more
efficient
manner.”
“The fact that it
is so specific is
great. Doctors
can see the
root of the
problem and
fix it
immediately
with fewer
tests.”

26. 61%
60%
56%
52%
50%
28%
28%
32%
35%
35%
It can help in the prevention of diseases
It can help in the early detection of diseases
It can help patients avoid taking medications
that may cause them side effects
It can aid in the development of more effective
medicines and treatments
It is personalized based on an individual's
genetic profile
Excitement around Personalized Medicine
Very exciting Somewhat exciting
Q23-27. How exciting would you say each of the following things about personalized medicine are to you? 26
Total
exciting
89%
88%
88%
87%
85%
When presented with a list of benefits, the vast majority say
that all are exciting—and half or more say very exciting.
The most intense excitement is around prevention and early detection of disease.

27. 70%
67%
65%
64%
20%
22%
25%
25%
5%
5%
4%
5%
5%
6%
6%
6%
Personalized medicine could help me avoid
the trial-and-error process of finding which of
several treatment options will work for me
Personalized medicine could result in less
invasive procedures
Personalized medicine could help reduce or
avoid treatment side effects
Personalized medicine could shift the
emphasis of my care from reaction to
prevention of illness
Benefits of Personalized Medicine
Major benefit Minor benefit No benefit Not sure
Q28-31. For each of the following benefits of personalized medicine, please indicate how much of a benefit it would be to you personally.
27
The benefits of personalized medicine are clear to most—
and most say these are MAJOR benefits.
Over two-thirds of respondents say each of the benefits would be major, with helping to
avoid the trial-and-error process of finding effective treatments for patients being the most
beneficial.

28. 28Q28-31. For each of the following benefits of personalized medicine, please indicate how much of a benefit it would be to you personally.
Those who have faced a life threatening illness themselves
or in their family are most likely to see major benefits in
avoiding a trial-and-error treatment process and less
invasive procedures.
Those who’ve never dealt with a life threatening illness themselves or in their family are
somewhat less likely to see major benefits than those who have.
Total major
benefit
Life
threatening
illness:
personally
Life
threatening
illness:
family
Neither
Personalized medicine could help me
avoid the trial-and-error process of
finding which of several treatment
options will work for me
70% 74% 74% 68%
Personalized medicine could result in
less invasive procedures
67% 66% 71% 65%
Personalized medicine could help
reduce or avoid treatment side effects
65% 68% 69% 63%
Personalized medicine could shift the
emphasis of my care from reaction to
prevention of illness
64% 67% 67% 63%

29. 29
44% have
worries56% no
worries
Anything worrisome about personalized medicine?
(unaided mentions)
Q39. Is there anything about personalized medicine that is worrisome? If so, for what reasons do you find that worrisome?
Just over 4 in 10 have top-of-mind worries about
personalized medicine, but close to 6 in 10 do not.

30. Q39. Is there anything about personalized medicine that is worrisome? If so, for what reasons do you find that worrisome? 30
Worries Related to Personalized Medicine (unaided)
Safety/side effects 12%
Side effects/if there are side effects 7%
Safety/is it safe/risks (non-specific) 5%
Addiction/addiction if pills are used 1%
Effectiveness/accuracy 8%
Accuracy/diagnosis could be wrong 6%
Effectiveness/will it really work 3%
Cost/coverage 8%
Cost/how much it costs/might be expensive 6%
Coverage/will health insurance pay for it/refusals 3%
Privacy 7%
Privacy/information kept private/genetic information getting into the wrong hands 7%
Other concerns 10%
New/untested/not around long enough 4%
Don't know enough/don't have enough information (non-specific) 3%
All of it/everything is worrisome (general) 2%
Playing God/against God’s plan/meddling with nature 1%
Process/results concerns 5%
Terminal diagnosis/finding out about an incurable disease/will impact quality of life 4%
How it works/how it's done 1%
No worries 56%
The most common top-of-mind worries focus on safety,
side effects, accuracy, and cost.
“How reliable is
this technology,
taking into
consideration
how new it is.”
“It worries me
that maybe it
wouldn’t work
and people
would still end
up with side
effects from
medication.”
“It may be more
expensive due
to so much
personalization.”

31. 62%
59%
52%
51%
25%
26%
30%
30%
10%
10%
13%
14%
4%
4%
6%
5%
The test might not be covered by my insurer
I might not be able to afford a personalized
approach to health care
The test could be used to deny coverage for
a treatment I want
Information about my risk for developing a
disease in the future could be used to deny
long-term care or life insurance that I need
Worries about Personalized Medicine
Major concern Minor concern Not a concern Not sure
Q40-43. Here are some reasons some people give for why they worry about personalized medicine. For each one, please indicate how much
of a concern it would be for you personally. 31
When presented with a list of specific worries, coverage
and cost are top concerns.
The most intense concerns are around the test not being covered by insurance and not
being able to afford it. Many also worry about denial of coverage.
2014: 69%
2014: 55%

32. 32
Q40-43. Here are some reasons some people give for why they worry about personalized medicine. For each one, please indicate how much
of a concern it would be for you personally.
Those in bad health and/or who have witnessed a life
threatening illness are more intensely concerned than
others.
Total
major
concern
Health status Life threatening illness
Excellent/
very good
Good Fair/poor Self Family Neither
The test might not be
covered by my insurer
62% 57% 63% 68% 73% 63% 60%
I might not be able to afford
a personalized approach to
health care
59% 56% 58% 68% 68% 63% 56%
The test could be used to
deny coverage for a
treatment I want
52% 48% 53% 58% 55% 57% 48%
Information about my risk
for developing a disease in
the future could be used to
deny long-term care or life
insurance that I need
51% 47% 50% 58% 53% 55% 48%

33. 33
67%
insurance
should
cover
33%
insurance
should not
cover
In considering a tradeoff between cost and coverage,
most believe the value of personalized medicine
outweighs the cost.
Because personalized tests and treatments are
targeted to a small number of patients, they are
sometimes more expensive than conventional tests
and treatments. With that in mind, read these two
statements. Of the two statements, which one is
closest to your own personal opinion?
• Personalized tests and treatments deliver more
value to patients and may help control overall
health care spending by avoiding the trial-and-
error process currently used to find a treatment
that works for each patient. Therefore, health
insurance companies should cover these tests
and treatments.
• Personalized medicine is promising, but health
care costs are already high and some of these
new tests and treatments are too expensive. In
order to keep health care affordable, health
insurance companies should not cover these
personalized tests and treatments.

34. 34
Those more vulnerable to health issues are most
likely to believe insurance should cover
personalized medicine.
Total
Age Life threatening illness
18-34 35-64 65+ Self Family Neither
Insurance
should cover
67% 63% 66% 78% 71% 73% 64%
Insurance
should not
cover
33% 37% 34% 22% 29% 27% 36%
Q51. Because personalized tests and treatments are targeted to a small number of patients, they are sometimes more expensive than conventional
tests and treatments. With that in mind, read these two statements. Of the two statements, which one is closest to your own personal opinion?
Adults 65 years and older and those who have witnessed a life threatening illness feel
more strongly that insurance should cover personalized medicine than others.

35. 35
Experiences with and Perceptions of Genetic Testing

36. 41%
52%
45%
43%
36%
43%
12% 9% 10%
4% 3% 3%
For use in developing a
personalized plan for
preventing illness or disease
For use in developing a
specific treatment plan for a
disease you already have
A treatment for a disease
informed by a genetic test
Likelihood to use Personalized Medicine
Not at all likely
Not too likely
Somewhat likely
Very likely
If your doctor recommended… Q18. a genetic test for use in developing a personalized plan for preventing illness or disease, how likely would you be to
have the test? Q19. a genetic test for use in developing a specific treatment plan for a disease you already have, how likely would you be to have the test?
Q20. a treatment for a disease informed by a genetic test, how likely would you be to accept your doctor's recommended treatment? 36
Total
not likely
16%
Total
likely
84%
12%
88%
13%
87%
If their doctor recommends it, most people say they are
likely to use personalized medicine for preventing and
treating disease.
Over half say they would be very likely to use a genetic test to guide treatment for a
disease they already have.

37. Q21. If your doctor recommended a genetic test to develop a personalized prevention plan or treatment plan, what questions would you have
about it? What would you like to have explained to you about personalized medicine?
37
“The main thing that
I would want to
know is that it is
safe with no bad
side effects.”
Questions about a personalized prevention/treatment plan
Process/how it works 41%
How does it help—how it will benefit or affect me? 14%
How does it work—what will be going on? 11%
What treatment? How would a treatment plan work? 8%
How is it done—what is the procedure? Is it invasive? 8%
How long will it take—what time frame/length? 5%
What are we looking for? What does it show? 4%
Safety/side effects 20%
What are the side effects—are there any after effects? 14%
What are the safety/risks—are there any dangers? 7%
Effectiveness/accuracy 18%
Accuracy—how accurate is it? Can results be wrong? 12%
How effective is it—are you sure it works? 8%
Other questions 15%
Everything—I want everything explained (general) 8%
Why do I need this—why do it? 3%
Who sees the results—do the results remain private? 2%
What are the pros and cons? 2%
Cost/coverage 12%
Cost—how much will it cost? 9%
Will insurance/my insurance cover it? 4%
Questions about personalized medicine center around
how it works, safety, potential side effects, and how
effective it is.
“How successful is
it? What will the
cost be? Does
insurance cover
some of the costs?”
“I want to know how
it helps in the long
run. And, I want to
know how it works.”

38. 38
Yes
10%
No 84%
Not sure 5%
Has your doctor talked with you about a genetic test?
Q16. Has your doctor or a medical provider ever talked with you about or recommended a genetic test to diagnose a disease or guide your treatment?
Only 1 in 10 patients have heard about genetic testing
from their doctors—most have not.
More than 8 in 10 adults say their doctors have not talked about or recommended
genetic tests to them in order to diagnose or guide treatment.

39. 13%
12%
12%
9%
62%
9%
To help you take steps to prevent getting a
specific disease in the future
To predict whether a specific medicine might
work for treating a disease you already have
To predict your likelihood of getting a specific
disease in the future
To predict whether you will experience severe
side effects from a particular medication
None of the above
Not sure
Q17. Below is a list of reasons people get personalized medicine tests. Have you personally ever gotten a genetic test for any of these purposes?
Please select all that apply. [MULTIPLE RESPONSES ACCEPTED]
39
Just over 1 in 10 adults—particularly young adults—say
they have gotten genetic tests for a variety of reasons.
While most (62%) Americans have not gotten a genetic test, those who have did so to prevent getting a
disease (13%), to predict if a medicine might work for a disease they already have (12%), or to predict
the likelihood they will get a specific disease in the future. Younger people (18-34) are significantly
more likely than those age 65 or older to take part in genetic testing for any of these reasons.
Reasons for a Genetic Test

40. 24%
76%
1%
Spoken to a Genetic Counselor
Yes No Not sure
40
17%
73%
10%
Familiar with Genetic Counseling
Yes No Not sure
Q44. Have you ever heard of genetic counseling?
Q45. [ASK IF HEARD OF GENETIC COUNSELING Q44] Have you ever spoken to a genetic counselor?
Most Americans are unfamiliar with genetic counseling,
and of those who are familiar, most have not spoken to a
genetic counselor.
While less than one in five (17%) have heard of genetic counseling, nearly a quarter of
those adults who are familiar have spoken to a genetic counselor. Despite so few having
heard of genetic counseling, 21% of women (vs. 13% of men) have heard of it.
IF heard of genetic counseling (n=172)

41. 41
6%
92% have
not
2% not sure
Purchased At-home DNA Test to Check Disease Risk
Q46. Have you ever purchased an at-home DNA test to check for your risk of developing certain diseases?
Fewer than 1 in 10 adults say they have purchased an
at-home DNA test, but millennials are leading the way.
Six percent (6%) of adults have purchased an at-home DNA test to check their risk of
developing certain diseases. However, 10% of millennials have purchased an at-home
DNA test, the most of any generation.
have

42. 42
70%
willing to
pay out
of
pocket
30% not
willing
Willing to Pay for Genome Sequencing
Q47. How much, if anything, would you be willing to pay out of pocket to have your whole genome sequenced today?
Thanks to recent
technological
developments,
scientists are now
capable of sequencing
all of a person's DNA.
This is called whole
genome sequencing.
Some of the data from
whole genome
sequencing can provide
information you and
your doctor can use to
develop personalized
treatment and
prevention plans, and
scientists hope that the
rest of the data may tell
us more about a person
as we learn more about
how the human body
functions in the future.
27%
25%
10%
5%
2%
1%
30%
Up to $50
Up to $100
Up to $300
Up to $500
Up to $1,000
Up to $5,000
Not willing to
pay
Amount willing to pay
Most are willing to pay at least something for genome
sequencing—particularly Gen X or younger.
Seventy percent of adults are willing to pay for genome sequencing, with most willing to pay up to $50
(27%) or $100 (25%). Asians (88%) are significantly more willing to pay than any other group and Gen
Xers or younger are more willing than Baby Boomers or older generations.

43. 43
AttitudesAround Genetic Testing Public Policies

44. 44
10%
aware
84%
Not
aware
6% not sure
Awareness of GINA
The Genetic Information Nondiscrimination Act made it illegal for employers or health
insurers to ask for genetic test results when making employment or coverage decisions.
Q48. Prior to reading this, were you aware of the Genetic Information Nondiscrimination Act [GINA]?
Q49. Does GINA make you more or less comfortable with genetic testing?
31%
43%
10%
4%
Comfort with Genetic Testing Knowing
about GINA
More comfortable No difference Less comfortable Not sure
Knowing about GINA makes one-third of Americans feel
more comfortable with genetic testing.
While most (84%) adults are unaware of GINA, nearly one-third (31%) are more comfortable with genetic testing
because of it. However, 43% say GINA makes no difference in their comfort level. 18-34 year olds, while more likely to
say they were aware of GINA than other age groups, were also more likely to say that it made them less comfortable
with genetic testing.

45. 45
9%
81% not
aware
10% not sure
Awareness of the All of Us Research Program
The All of Us Research Program [formerly the Precision Medicine Initiative] is an effort by the
federal government to gather data from at least one million people living in the United States
that can be used to accelerate progress in personalized medicine research.
Q50. Prior to reading this, were you aware of the federal government’s All of Us™ Research Program?
Most adults are unaware of the All of Us Research
Program. Younger adults tend to be the most aware.
Only 9% of adults are aware of the All of Us Research Program. 18-34 year olds (14%)
are more aware than older counterparts.
aware

46. 52%
44%
10%
9%
36%
40%
27%
23%
4%
6%
27%
30%
1%
2%
27%
31%
6%
9%
9%
7%
Doctors and patients will have more information
available to decide which course of treatment is best
for the individual.
Patients will spend less in out-of-pocket costs because
the right treatment at the right time will help them avoid
paying to treat medical problems caused by the side
effects and symptoms that remain when a treatment
isn't quite right for them.
The government and insurance companies will decide
which personalized medicine treatments are cost-
effective on average, and only cover those that meet
their standards.
Patients will face higher out-of-pocket costs because of
higher co-payments for the tests and treatments used
in personalized medicine.
Possible policy outcomes
Completely acceptable Mostly acceptable Mostly unacceptable Completely unacceptable Not sure
Q52-55. Here is a list of possible outcomes that might come about as a result of different policy choices related to personalized medicine. For
each one, indicate how acceptable that outcome would be for you. 46
Total
acceptable
88%
83%
37%
32%
Americans want more information and lower costs when it
comes to personalized medicine.
Americans like the idea of having more information available to doctors and lower out of
pocket costs, but find higher out of pocket costs and government control unacceptable.

47. APPENDIX

48. Demographics
48
Gender %
Male 49
Female 51
Region %
Northeast 18
Midwest 22
South 37
West 23
Generation %
Gen Z 8
Millennials 30
Gen X 27
Baby Boomers 32
Silent/Greatest 4
Education %
Not college grad 70
College grad 30
Race/Ethnicity %
White 61
Hispanic 18
Black/African American 12
Asian 6
American Indian/Alaska Native 1
Native Hawaiian or other Pacific Islander -
Other 1
Political Party %
Democrat 39
Republican 35
Independent 15
Income %
Less than $45,000 44
More than $45,000 50

49. KRC Research Team
49
Dylan Luper
Senior Research Analyst
KRC Research
733 10th St. NW
202-585-2909 (direct)
dluper@krcresearch.com
www.krcresearch.com
@krcresearch | #krcfindings
Our insight. Your breakthrough.
Katie Snediker
Research Manager
KRC Research
909 Third Avenue
212-445-8037 (direct)
ksnediker@krcresearch.com
www.krcresearch.com
@krcresearch | #krcfindings
Our insight. Your breakthrough.
Mark David Richards
Senior Vice President
KRC Research
733 10th St. NW
202-230-8767(direct)
mrichards@krcresearch.com
www.krcresearch.com
@krcresearch | #krcfindings
Our insight. Your breakthrough.