Public Perspectives on Personalized Medicine
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Public Perspectives on Personalized Medicine National survey of U.S. adults May 2018 Survey conducted by Survey conducted for Table of Contents 2 BACKGROUND Objectives and Methodology Research Objectives and Method Objectives The survey
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01
Public Perspectives on Personalized Medicine National survey of U.S. adults
May 2018
Survey conducted by Survey conducted for<br>
May 2018
Survey conducted by Survey conducted for<br>
02
Table of Contents 2<br>
03
BACKGROUND Objectives and Methodology<br>
04
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.<br>
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.<br>
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EXECUTIVE SUMMARY Key Findings<br>
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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.<br>
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.<br>
07
Key Findings: Excitement and value outweigh concerns. 7 The possibility of disease prevention and detection excites people most.
Six in 10 say these benefits are very exciting.
Reducing trial-and-error medicine is seen as the biggest benefit.
Seven in 10 say this is a major benefit.
Those who have witnessed a life-threatening illness see the most benefit from personalized medicine.
Most don’t have pre-established concerns about personalized medicine.
Top-of-mind concerns involve questions about safety, side effects, and reliability.
When shown potential concerns, the biggest fear is that personalized medicine will not be covered by insurers and people won’t be able to afford it.
Those in poor health and/or those who have personal experience with life threatening illnesses are most concerned about coverage.
Most believe that insurance companies should cover personalized medicine.
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.<br>
Six in 10 say these benefits are very exciting.
Reducing trial-and-error medicine is seen as the biggest benefit.
Seven in 10 say this is a major benefit.
Those who have witnessed a life-threatening illness see the most benefit from personalized medicine.
Most don’t have pre-established concerns about personalized medicine.
Top-of-mind concerns involve questions about safety, side effects, and reliability.
When shown potential concerns, the biggest fear is that personalized medicine will not be covered by insurers and people won’t be able to afford it.
Those in poor health and/or those who have personal experience with life threatening illnesses are most concerned about coverage.
Most believe that insurance companies should cover personalized medicine.
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.<br>
08
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.<br>
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.<br>
09
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.<br>
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.<br>
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DETAILED FINDINGS<br>
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11 Awareness of and Interest in Personalized Medicine<br>
12
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%<br>
13
Q8. Thinking about everything you have seen, heard and read lately, what medical advances or tools on the horizon have the most potential to positively change health care? 13 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.”<br>
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.”<br>
14
14 Q9. Which of the following words or terms have you heard or read something about prior to today? Please select all that apply. *NOTE: In 2014, prior to the start of the All of Us Research Program, respondents were only asked about personalized medicine, but not about precision medicine. In 2018, they were asked about both because both terms are now used interchangeably. When asked specifically, 1 in 3 said they have heard of either personalized or precision medicine, or both. More have heard the term personalized medicine (29%) than precision medicine (15%). There has been little change in awareness since the previous survey conducted in 2014, when we measured 38% aware.*<br>
15
Q10. [IF HEARD OR READ SOMETHING ABOUT PERSONALIZED OR PRECISION MEDICINE] What have you seen, heard or read about personalized medicine, sometimes referred to as precision medicine? 15 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.”<br>
16
Q11. [IF HEARD OR READ SOMETHING ABOUT PERSONALIZED OR PRECISION MEDICINE] Does this description match with what you thought personalized medicine or precision medicine was, or is this something different from what you had in mind? 16 Personalized medicine, sometimes referred to as precision medicine, is an emerging field that uses diagnostic tools to identify specific biological markers, often genetic, to help determine which medical treatments and procedures will be best for each patient. By combining this information with an individual's medical records and circumstances, personalized medicine allows doctors and patients to develop targeted prevention and treatment plans. The goal is to provide the right treatment in the right dose to the right patient at the right time. 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<br>
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Q14. How well informed do you feel about personalized medicine? 17 Total
not informed
53% Total
informed
47% 37% 63% In fact, only about 10% feel informed about personalized medicine. Most say they do not feel informed. Of all adults, just over half say they don’t feel informed about personalized medicine. Those who were familiar with it prior to the survey are more likely to feel somewhat or very informed. This is in line with what was seen in 2014. 48% 49%<br>
not informed
53% Total
informed
47% 37% 63% In fact, only about 10% feel informed about personalized medicine. Most say they do not feel informed. Of all adults, just over half say they don’t feel informed about personalized medicine. Those who were familiar with it prior to the survey are more likely to feel somewhat or very informed. This is in line with what was seen in 2014. 48% 49%<br>
18
Q12. What is your reaction to the description of personalized medicine?
* 2014 description was slightly different: Personalized medicine is an emerging field that uses diagnostic tools to identify specific biological markers, often genetic, to help determine which medical treatments and procedures will be best for each patient. By combining this information with an individual’s medical records and circumstances, personalized medicine allows doctors and patients to develop targeted prevention and treatment plans. The goal is to provide the right treatment in the right dose to the right patient at the right time. 18 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.*<br>
* 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.*<br>
19
Q13. What are your reasons for that reaction? Please explain as clearly as possible. 19 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.”<br>
20
* Percent based on all responses, not only neutral comments.
Q13. What are your reasons for that reaction? Please explain as clearly as possible. 20 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.”<br>
Q13. What are your reasons for that reaction? Please explain as clearly as possible. 20 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.”<br>
21
Q15. How interested are you in learning more about how personalized medicine can be used? 21 Total
not interested
18% Total
interested
82% Interest in personalized medicine is very high—and has grown 13 percentage points since 2014. Over eight in 10 American adults say they are interested in learning more about personalized medicine, up from seven in 10 in 2014. 27% 69% 13 point increase<br>
not interested
18% Total
interested
82% Interest in personalized medicine is very high—and has grown 13 percentage points since 2014. Over eight in 10 American adults say they are interested in learning more about personalized medicine, up from seven in 10 in 2014. 27% 69% 13 point increase<br>
22
Q32-38. How interested are you in learning more about how personalized medicine can be used in the following areas? 22 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.<br>
23
23 * Highlighted cell indicates statistically significant difference between categories.
Q32-38. How interested are you in learning more about how personalized medicine can be used in the following areas? Interests vary somewhat by gender and age. Women show more intense interest than men in learning about the specific uses of personalized medicine. Those age 65+ are most interested in how it can treat heart disease, whereas those 18-34 want to learn more about applications related to inherited and psychiatric disorders.<br>
Q32-38. How interested are you in learning more about how personalized medicine can be used in the following areas? Interests vary somewhat by gender and age. Women show more intense interest than men in learning about the specific uses of personalized medicine. Those age 65+ are most interested in how it can treat heart disease, whereas those 18-34 want to learn more about applications related to inherited and psychiatric disorders.<br>
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24 Excitement and Worry around Personalized Medicine<br>
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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 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.”<br>
26
Q23-27. How exciting would you say each of the following things about personalized medicine are to you? 26 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.<br>
27
Q28-31. For each of the following benefits of personalized medicine, please indicate how much of a benefit it would be to you personally. 27 The benefits of personalized medicine are clear to most—and most say these are MAJOR benefits. Over two-thirds of respondents say each of the benefits would be major, with helping to avoid the trial-and-error process of finding effective treatments for patients being the most beneficial.<br>
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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.<br>
29
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.<br>
30
Q39. Is there anything about personalized medicine that is worrisome? If so, for what reasons do you find that worrisome? 30 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.”<br>
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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%<br>
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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.<br>
33
33 In considering a tradeoff between cost and coverage, most believe the value of personalized medicine outweighs the cost.<br>
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34 Those more vulnerable to health issues are most likely to believe insurance should cover personalized medicine. 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.<br>
35
35 Experiences with and Perceptions of Genetic Testing<br>
36
If your doctor recommended… Q18. a genetic test for use in developing a personalized plan for preventing illness or disease, how likely would you be to have the test? Q19. a genetic test for use in developing a specific treatment plan for a disease you already have, how likely would you be to have the test? Q20. a treatment for a disease informed by a genetic test, how likely would you be to accept your doctor's recommended treatment? 36 Total
not likely
16% Total
likely
84% 12% 88% 13% 87% If their doctor recommends it, most people say they are likely to use personalized medicine for preventing and treating disease. Over half say they would be very likely to use a genetic test to guide treatment for a disease they already have.<br>
not likely
16% Total
likely
84% 12% 88% 13% 87% If their doctor recommends it, most people say they are likely to use personalized medicine for preventing and treating disease. Over half say they would be very likely to use a genetic test to guide treatment for a disease they already have.<br>
37
Q21. If your doctor recommended a genetic test to develop a personalized prevention plan or treatment plan, what questions would you have about it? What would you like to have explained to you about personalized medicine? 37 “The main thing that I would want to know is that it is safe with no bad side effects.” Questions about 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.”<br>
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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.<br>
39
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<br>
40
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)<br>
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)<br>
41
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<br>
42
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.<br>
43
43 Attitudes Around Genetic Testing Public Policies<br>
44
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.<br>
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.<br>
45
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 personalized medicine research. Q50. Prior to reading this, were you aware of the federal government’s All of Us™ Research Program? Most adults are unaware of the All of Us Research Program. Younger adults tend to be the most aware. Only 9% of adults are aware of the All of Us Research Program. 18-34 year olds (14%) are more aware than older counterparts. aware<br>
46
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 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.<br>
47
APPENDIX<br>
48
Demographics 48<br>
49
KRC Research Team 49<br>