Medicine . National survey of U.S. . adults. May 2018. Survey conducted by. Survey conducted . for. Table of Contents. Background. 3. Objectives and Methodology. 4. Executive Summary. 5. Key. Findings. ID: 738039
DownloadNote - The PPT/PDF document "Public Perspectives on Personalized" is the property of its rightful owner. Permission is granted to download and print the materials on this web site for personal, non-commercial use only, and to display it on your personal computer provided you do not modify the materials and that you retain all copyright notices contained in the materials. By downloading content from our website, you accept the terms of this agreement.
Presentations text content in Public Perspectives on Personalized
Slide1
Public Perspectives on
Personalized Medicine
National survey of U.S.
adultsMay 2018Survey conducted by
Survey conducted
for
Slide2
Table of Contents
Background
3
Objectives and Methodology4Executive Summary5Key Findings
6
Detailed Findings
10
Awareness of and Interest in Personalized Medicine
11Excitement and Worry around Personalized Medicine24Experiences with and Perceptions of Genetic Testing35Attitudes around Genetic Testing Public Policies43Appendix47
2
Slide3
BACKGROUND
Objectives
and Methodology
Slide4
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.
Slide5
EXECUTIVE SUMMARY
Key Findings
Slide6
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.
Slide7
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 p
ersonalized
medicine.
Two-thirds see the value outweighing the
cost. This
is especially true of those who could benefit from tests and treatments more immediately, or could have in the past.
Slide8
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 disease.
Slide9
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
.
Slide10
DETAILED FINDINGS
Slide11
11
Awareness of
and Interest in Personalized Medicine
Slide12
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%
Slide13
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 diseases4% Flu treatment or shots4%
New treatment/new medications/vaccines (non-specific)
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.
”
Slide14
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.* Heard the term personalized medicine and/or precision medicine:34% (Net)
Slide15
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 s
een
, heard or read about
personalized / precision medicine?
(unaided question)n=344Individualized treatment38% Targeted treatment; medicine tailored to treat your specific disease/need16% Individualized treatment; treating an individual person
15%
Genetic treatment/therapies based on your genes/based on genetics10% Treatment based on lifestyle1% 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.”
Slide16
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, p
ersonalized 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.
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
Slide17
Q14.
How well informed do you feel about personalized medicine?
17
Total
not
informed
53%
Total
informed47%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%
Slide18
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
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.*
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 efficient5%
Advanced treatment/advances in medicine/innovative3%
Makes sense/accurate2%Individualized treatment31%
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
.”
Slide20
* 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 others2% 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 fetched1%
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.”
Slide21
Q15.
How interested are you in learning more about how personalized medicine
can be used?
21
Total
not
interested
18%
Totalinterested82%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
Slide22
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.
Slide23
23
Total
very
interested
Men
Women
Age
18-34
Age 35-64Age
65+
Treating cancer67%
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%
*
H
ighlighted cell indicates statistically significant difference between categories.
Q32-38.
How interested are you in learning more about how
p
ersonalized
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.
Slide24
24
Excitement and Worry around Personalized
Medicine
Slide25
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 error14% Preventive medicine—the ability to prevent, diagnose before onset of disease9%
Genetic testing/testing for specific disease that runs in my family6%
Targeted therapy/targeted treatment3% Individualized treatment/aimed at the individual3%
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.”
Slide26
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.
Slide27
Q28-31.
For each of the following benefits of personalized medicine,
please indicate how much of a benefit it would be to you personally.
27The 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.
Slide28
28
Q28-31.
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 benefitLife threatening illness: personally
Life threatening illness:
familyNeitherPersonalized 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%
Slide29
29
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.
Slide30
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 used1%
Effectiveness/accuracy
8% Accuracy/diagnosis could be wrong6% Effectiveness/will it really work3%
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
.”
Slide31
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%
Slide32
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%
Slide33
33
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.
Slide34
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.
Slide35
35
Experiences with and Perceptions of Genetic Testing
Slide36
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%
Totallikely84%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.
Slide37
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
.”
Slide38
38
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.
Slide39
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
Slide40
40
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)
Slide41
41
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
Slide42
42
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.
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.
Slide43
43
Attitudes Around Genetic Testing Public Policies
Slide44
44
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?
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.
Slide45
45
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 p
ersonalized 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
Slide46
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.
Slide47
APPENDIX
Slide48
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
Slide49
KRC Research Team
49
Dylan Luper
Senior Research Analyst
KRC
Research
733 10
th
St. NW202-585-2909 (direct)dluper@krcresearch.comwww.krcresearch.com@krcresearch | #krcfindings
Our insight. Your breakthrough.
Katie SnedikerResearch ManagerKRC Research909 Third Avenue212-445-8037 (direct)ksnediker@krcresearch.comwww.krcresearch.com@krcresearch | #krcfindings
Download this presentation
DownloadNote - The PPT/PDF document "Public Perspectives on Personalized" is the property of its rightful owner. Permission is granted to download and print the materials on this web site for personal, non-commercial use only, and to display it on your personal computer provided you do not modify the materials and that you retain all copyright notices contained in the materials. By downloading content from our website, you accept the terms of this agreement.
Presentations text content in Public Perspectives on Personalized
Public Perspectives on
Personalized Medicine
National survey of U.S.
adultsMay 2018Survey conducted by
Survey conducted
for
Slide2Table of Contents
Background
3
Objectives and Methodology4Executive Summary5Key Findings
6
Detailed Findings
10
Awareness of and Interest in Personalized Medicine
11Excitement and Worry around Personalized Medicine24Experiences with and Perceptions of Genetic Testing35Attitudes around Genetic Testing Public Policies43Appendix47
2
Slide3BACKGROUND
Objectives
and Methodology
Slide4Research 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.
Slide5EXECUTIVE SUMMARY
Key Findings
Slide6Key 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.
Slide7Key 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 p
ersonalized
medicine.
Two-thirds see the value outweighing the
cost. This
is especially true of those who could benefit from tests and treatments more immediately, or could have in the past.
Slide8Key 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 disease.
Slide9Key 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
.
Slide10DETAILED FINDINGS
Slide1111
Awareness of
and Interest in Personalized Medicine
Slide12Q7. 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%
Slide13Q8. 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 diseases4% Flu treatment or shots4%
New treatment/new medications/vaccines (non-specific)
3% Disease treatment (non-specific)2% HIV/AIDS treatments2%
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.
”
Slide1414
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.* Heard the term personalized medicine and/or precision medicine:34% (Net)
Slide15Q10. [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 s
een
, heard or read about
personalized / precision medicine?
(unaided question)n=344Individualized treatment38% Targeted treatment; medicine tailored to treat your specific disease/need16% Individualized treatment; treating an individual person
15%
Genetic treatment/therapies based on your genes/based on genetics10% Treatment based on lifestyle1% 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.”
Slide16Q11. [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, p
ersonalized 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.
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
Slide17Q14.
How well informed do you feel about personalized medicine?
17
Total
not
informed
53%
Total
informed47%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%
Slide18Q12. 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
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 positive65Neutral28Mostly negative2Don’t know/ref.5
Slide19Q13. 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 efficient5%
Advanced treatment/advances in medicine/innovative3%
Makes sense/accurate2%Individualized treatment31%
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
.”
Slide20* 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 others2% 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 fetched1%
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.”
Slide21Q15.
How interested are you in learning more about how personalized medicine
can be used?
21
Total
not
interested
18%
Totalinterested82%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
Slide22Q32-38.
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.
Slide2323
Total
very
interested
Men
Women
Age
18-34
Age 35-64Age
65+
Treating cancer67%
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%
*
H
ighlighted cell indicates statistically significant difference between categories.
Q32-38.
How interested are you in learning more about how
p
ersonalized
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.
Slide2424
Excitement and Worry around Personalized
Medicine
Slide25Q22. 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 error14% Preventive medicine—the ability to prevent, diagnose before onset of disease9%
Genetic testing/testing for specific disease that runs in my family6%
Targeted therapy/targeted treatment3% Individualized treatment/aimed at the individual3%
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.”
Slide26Q23-27.
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.
Slide27Q28-31.
For each of the following benefits of personalized medicine,
please indicate how much of a benefit it would be to you personally.
27The 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.
Slide2828
Q28-31.
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 benefitLife threatening illness: personally
Life threatening illness:
familyNeitherPersonalized 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%
Slide2929
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.
Slide30Q39. 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 used1%
Effectiveness/accuracy
8% Accuracy/diagnosis could be wrong6% Effectiveness/will it really work3%
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
.”
Slide31Q40-43
. 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%
Slide3232
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%
Slide3333
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.
Slide3434
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.
Slide3535
Experiences with and Perceptions of Genetic Testing
Slide36If
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%
Totallikely84%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.
Slide37Q21. 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
.”
Slide3838
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.
Slide39Q17
. 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
Slide4040
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)
Slide4141
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
Slide4242
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.
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.
Slide4343
Attitudes Around Genetic Testing Public Policies
Slide4444
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?
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.
Slide4545
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 p
ersonalized 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
Slide46Q52-55. 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.
Slide47APPENDIX
Slide48Demographics
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
Slide49KRC Research Team
49
Dylan Luper
Senior Research Analyst
KRC
Research
733 10
th
St. NW202-585-2909 (direct)dluper@krcresearch.comwww.krcresearch.com@krcresearch | #krcfindings
Our insight. Your breakthrough.
Katie SnedikerResearch ManagerKRC Research909 Third Avenue212-445-8037 (direct)ksnediker@krcresearch.comwww.krcresearch.com@krcresearch | #krcfindings
Our insight. Your breakthrough.
Mark David Richards
Senior Vice President
KRC
Research
733 10
th
St. NW
202-230-8767(direct)
mrichards@krcresearch.com
www.krcresearch.com
@krcresearch | #
krcfindings
Our insight. Your breakthrough.