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Presentations text content in Public Perspectives on Personalized
Public Perspectives on
National survey of U.S.
adultsMay 2018Survey conducted by
Table of Contents
Objectives and Methodology4Executive Summary5Key Findings
Awareness of and Interest in Personalized Medicine
11Excitement and Worry around Personalized Medicine24Experiences with and Perceptions of Genetic Testing35Attitudes around Genetic Testing Public Policies43Appendix47
Research Objectives and Method
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.
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
: Awareness of personalized medicine remains low, but interest is on the rise.
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
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
saying that they can see the benefits it will have to
. The remainder are neutral, because they do not know enough to say.
Since 2014, interest in personalized medicine has
Over eight in 10 would like to learn more about
up 13 percentage points since
be used to treat
cancer is the
people would like
: Excitement and value outweigh concerns.
possibility of disease prevention
detection excites people most.
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
involve questions about safety, side effects, and reliability.
is that personalized medicine
will not be covered by
insurers and people won’t be able to afford it.
and/or those who
have personal experience with life threatening illnesses
are most concerned about coverage.
Most believe that insurance companies should cover p
Two-thirds see the value outweighing the
is especially true of those who could benefit from tests and treatments more immediately, or could have in the past.Slide8
: Most do not have personal experience with personalized medicine, but most are willing to use it.
Americans are likely to use
medicine if their doctor recommends
it, but they have questions.
Over 8 in 10 adults would be likely to use
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
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%)
purchased an at-home DNA
test to check for the risk of disease.Slide9
: When it comes to policy, Americans want more information made available and lower costs.
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
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
, 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
government or insurance
control of who is able to access
Increased government or insurance
over who gets covered and who
doesn’t — as well as higher
costs to cover personalized
and Interest in Personalized MedicineSlide12
closely do you follow news about health, health care, and the latest developments in medicine?
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
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?
What people have heard about
medical advances or tools with potential to positively change health care
Advances in treatment of diseases
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
Technology in medicine (non-specific)
Artificial intelligence/robots/robot surgery
DNA and genetic testing
Advancements in medicine (general)
Alternate medicine/eating right/diet
Research is increasing (non-specific)
the cost of
Obamacare/elimination of Obamacare
Yet, personalized medicine is not yet top-of-mind.
Unaided, only 3 people mentioned it.
cures and inroads to curing cancer using targeting
“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
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 (
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?
have you s
, 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
Genetic treatment/therapies based on your genes/based on genetics10% Treatment based on lifestyle1% Can target specific areas of body to prevent disease
Other general comments
Heard of it; have heard the term (general)
Good medicine; better medicine (non-specific)
Becoming more popular, on the upward swing/on the increase
More effective; it works good
Used for cancer treatment; for cancer patients
Among those who have heard about personalized medicine, nearly a third cannot describe it.
emerging approach for disease
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?
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
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 totalSlide17
How well informed do you feel about personalized medicine?
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%
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.
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.*
Mostly positive65Neutral28Mostly negative2Don’t know/ref.5Slide19
Q13. What are your reasons for that reaction? Please explain as clearly as possible.
Reasons for Positive Reactions about
Positive/feel positive about it/sounds good (general)
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)
Everyone is different/bodies react differently
Right medication/give patient the exact medicine needed
Preventing health problems/prevent illness
Genetic testing to target problems/genetic testing to find the right
Positive feelings about personalized medicine relate to the appeal of an individualized approach.
description pinpoints exactly how to treat a specific diagnosis of a patient, leading to more efficient
in less time.”
believe it will help by taking out a lot
doctors do now. A
of people have to
go back to the doctor
for new prescriptions until
they find one
bodies are different and one person's cure may not work for the next
* Percent based on all responses, not only neutral comments.
Q13. What are your reasons for that reaction? Please explain as clearly as possible.
Reasons for Neutral
or Negative Reactions to Personalized Medicine
General neutral mentions
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%
Not safe/unnatural/don't trust the medical system
Expensive/will run up costs
Doesn't make sense/confusing
Neutral reactions stem from feeling inadequately informed or wanting to know more. A few worry about safety.
know enough about it to make an informed judgement
sounds good, but who knows until it is
“Sounds great but
How interested are you in learning more about how personalized medicine
can be used?
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 increaseSlide22
How interested are you in learning more about how personalized medicine
can be used in the following areas?
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
cardiovascular or heart disease
psychiatric or neurological disorders
parents who may be at risk of passing an inherited disorder/disease to their children
ighlighted cell indicates statistically significant difference between categories.
How interested are you in learning more about how
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
Excitement and Worry around Personalized
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?
What is exciting or beneficial about personalized medicine?
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%
More effective and better treatments that work better
Better health/healthier, will feel better
Cures for diseases
Live better, live longer
All of it—everything sounds beneficial (general)
Helpful/helps people (non-specific)
New approach/new treatment
Less side effects/decrease in side effects
the cost of
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
illnesses would be combatted in a more efficient
“The fact that it is so specific is great. Doctors can see the root of the problem and fix it immediately with fewer
How exciting would you say each of the following things about personalized medicine
are to you?
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
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
with helping to avoid the trial-and-error process of finding effective treatments for patients being the most beneficial.Slide28
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
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
medicine could result in less invasive procedures
medicine could help reduce or avoid treatment side effects
medicine could shift the emphasis of my care from reaction to prevention of illness
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?
Worries Related to Personalized Medicine (unaided)
Side effects/if there are side effects
7% Safety/is it safe/risks (non-specific)5% Addiction/addiction if pills are used1%
8% Accuracy/diagnosis could be wrong6% Effectiveness/will it really work3%
Cost/how much it costs/might be expensive
Coverage/will health insurance pay for it/refusals
Privacy/information kept private/genetic information getting into the wrong
New/untested/not around long enough
Don't know enough/don't have enough information (non-specific)
All of it/everything is worrisome (general)
Playing God/against God’s plan/meddling with nature
Terminal diagnosis/finding out about an incurable disease/will impact quality of life
How it works/how it's done
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.”
me that maybe it
people would still end up with
“It may be more expensive due to so much personalization
. 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.
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.
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.
Life threatening illness
test might not be covered by my insurer
might not be able to afford a personalized approach to health care
test could be used to deny coverage for a treatment I want
about my risk for developing a disease in the future could be used to deny long-term care or life insurance that I need
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?
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
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
Those more vulnerable to health issues are most likely to believe insurance should cover personalized medicine.
Life threatening illness
Insurance should cover
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
Experiences with and Perceptions of Genetic TestingSlide36
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
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
“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?
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?
What are the side effects—are there any after effects?
What are the safety/risks—are there any dangers?
Accuracy—how accurate is it? Can results be wrong?
How effective is it—are you sure it works?
Everything—I want everything explained (general)
Why do I need this—why do it?
Who sees the results—do the results remain private?
What are the pros and cons?
Cost—how much will it cost?
Will insurance/my insurance cover
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
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
. 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]
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 TestSlide40
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
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.
. 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
Attitudes Around Genetic Testing Public PoliciesSlide44
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.
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
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
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.awareSlide46
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.
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
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