STAT Harvard Poll Jan 2016 Genetic Technology

Transcript

1 THE PUBLIC AND GENETIC EDITING, TESTING, AND THERAPY January 2016 0

2 INTRODUCTION and in conducted by STAT Harvard T.H. Chan School of Public A new poll of adults the United States that Americans have mixed views on emerging genetic technologies, including Health shows changing the genetic characteristics of unborn babies ( ) , genetic testing, and gene therapy germline editing . This survey was conducted to understand the public’s views on emerging technologies in treatments human genetics , and whether or not the public supports federal government funding and regulation of these technologies. It was conducted in response to the current scientific debate over gene editing, as well as the recent National Academy of Sciences’ International Summit on Human Gene Editing. (NAS) According to the National Academies of Sciences, Engineering, and Medicine, powerful new gen e - editing technologies, such as CRISPR - Cas9, have the potential to advanc e science and treat d isease s , but 1 they also raise concerns and present complex challenges . In particular, scientific, ethical, and governance these new technologies may potentially b e used to make genetic changes that could be passed on to future generations, thereby changing the human gene pool. At the end of the NAS Summit, the organizing committee concluded that while gene editing for clinical use in somatic cells holds great promi se, it 2 would be irresponsible to proceed with any clinical use of germline editing. This corresponds with the findings in our poll: a majority of Americans favor gene therapy for clinical use among patients with serious diseases, but they largely oppose g enetic editing of unborn babies, even to reduce their risk of developing serious diseases. The organizing committee of the Summit also called on the NAS to create an ongoing international forum to engage a wide range of perspectives, including members of the general public. This poll was conducted to ask Americans about some of the issues involved in the emerging public It sought the public’s views on seven dialogue on genetic technologies. questions , in response to this main summit (1) What does the public think about chang ing the genetic characteristics of unborn babies? : (2) Does the public think the government should fund research on changing the genes of unborn babies? (3) Who does the public think should decide whether or not to allow the genes of unborn babies to be ch anged ? (4) Who has undergone genetic testing, and why? (5) Is the public interested in taking a genetic test in the future? ( 6 7 ) Does the public think the ) What does the public think about gene therapy? ( government should fund research on gene therapy? 1 For m ore information , see the National Academies of Sciences, Engineering, and Medicine. “Human Gene - Editing Initiative.” A http://www.nationalacademies.org/gene - editing/index.htm . vailable at: 2 National Academies of Sciences, Engineering, and Medicine. International Summit on Human Gene Editing. “On Human Gene Editing: International Summit Statement.” December 3, 2015. Available at: http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12032015a . 1

3 WHAT DOES THE PUBLIC THINK ABOUT CHANGING THE GENETIC CHARACTERISTICS OF UNBORN BABIES? Recently, there have been discussions among international experts on the potential for changing the genetic characteristics of unborn babies to improve their healt h, physical traits, or intelligence (known as (31%) have heard quite a lot or some about discussions “germline editing”). About three in ten Americans on this issue, while almost seven in ten (69%) have heard not much or nothing at all. g controversy over these new human gene - editing technologies, where some scientists There is an ongoin argue that parents should have the right to change the genes of unborn babies to prevent certain serious diseases such as Huntington’s disease, cystic fibrosis, or some typ es of muscular dystrophy. In addition, some also believe parents should be able to change their unborn babies’ genes to select desired characteristics such as intelligence, or physical traits such as athletic ability or appearance. On the other hand, some scientists argue that changing the genes of unborn babies an unsafe experiment with is uncertain consequences, these genetic changes will be passed onto future generations, they may cause irreversible harm, and they could lead to a society of genetic “have s” and “have nots.” Figure 1 depicts how Americans feel about changing the genes of unborn babies in two circumstances. Roughly one in four Americans (26%) think changing the genes of unborn babies should be legal to reduce their risk of developing cer tain serious diseases, while 65 percent think it should be illegal . When asked about changing the genes of unborn babies to improve their intelligence or ph ysical characteristics, only 11 percent of Americans think that it should be legal, while the vast m ajority (83%) of adults think it should be illegal. F IGURE 1 : Americans’ Views on Changing the Genes of Unborn Babies to ... should be legal or should be illegal? Q. Do you think that changing the genes of unborn babies Reduce their risk 26% of developing certain serious 65% diseases Improve their 11% intelligence or physical 83% characteristics Should be legal Should be illegal Human Gene Editing highlighted the controversies among experts on The International Summit on whether it is responsible to proceed with any clinical use of germline editing, and the results of this rimental techniques survey align with scientists’ views about the need for caution in proceeding with expe to change the genes of unborn babies. However, although a majority of the public did not express support for changing the genes of unborn babies, those who said they had heard or read about these discussions s those who had not (20%) to say they thought it should be legal to change (41%) were twice as likely a the genes of unborn babies to reduce their risk of developing certain serious diseases. 2

4 DOES T HE PUBLIC THINK THE GOVERNMENT SHOULD FUND ON CHANGING THE GENES OF UNBOR ? RESEARCH N BABIES While Americans largely oppose changing the genes of unborn babies, their attitudes toward federal funding of research on changing the genes of unborn babies to reduce the risk of developing government (44%) think that the federal government diseases is more positive. More than four in ten Americans should fund scientific research on changing the genes of unborn babies to reduce their risk of developing certain serious diseases such as Huntin gton’s disease, cystic fibrosis, or some types of muscular (Figure 2). Fifty dystrophy one percent of Americans think the federal government should not fund this - type of research. Only 14 percent of Americans think the federal government should fund scien tific research on changing the genes of unborn babies that aims to improve their characteristics such as intelligence o r physical traits such as athletic ability or appearance. More than eight in ten adults (82%) think the federal government should not fun d this type of research. Although a majority of the public did not express support for federal research fundi ng for changing the genes of unborn babies , a majority (54%) of those who said they had heard or read about these discussions supported funding f or changing the genes of unborn babies to reduce their risk of developing certain serious diseases, compared to 39 percent of those who had not heard or read much about this issue. Research IGURE 2 : Americans’ Views on Federal Funding for F On Changing the Genes of Unborn Babies Q. Do you think the federal government should or should not fund scientific research on changing the genes of unborn babies... To reduce their risk of developing 44% certain serious diseases such as Huntington's disease, cystic fibrosis, or 51% some types of muscular dystrophy That aims to improve their 14% characteristics such as intelligence or physical traits such as athletic ability or 82% appearance Should Fund Should Not Fund 3

5 : WHO SHOULD DECIDE? CHANGING THE GENES OF UNBORN BABIES When asked about who should make dec isions on whether or not to allow changing the genes of unborn babies to improve their health, physical traits, or intelligence, a majority of adults (53%) said we should leave it up to scientists, physicians, and other te chnological experts. On ly 9 percen t said we should leave it up to government offici als and policy makers, while 31 percent said we sho uld leave it up to someone or as Democrats (16%) Republicans else . Only a small percentage of those who self - identified as either (6%) thought we should leave it up to the government to make these decisions. IGURE F 3 : Who Should Decide Whether or Not to Allow Changing the Genes of Unborn Babies ? For decisions on whether or not to allow changing the genes of unborn babies to improve their healthy, leave it up to ... physical traits, or intelligence, do you think we should Scientists, physicians, and other 53% technological experts 31% Other/Neither (vol.) Government officials and policy 9% makers 7% Don't know/refused 4

6 WHO HAS UNDERGONE GENETIC TESTING, AND WHY? tests use DNA to predict Recently, there have been some discussions in the news about genetic , which and diagnose certain diseases, or can identify where a person’s ancestors come from . Half (50%) of say they have heard or read some or quite a lo t Americans recent discussions on genetic testing, about while half have either not heard much (24%) or anything at all (26%). A majority (57%) of Americans believe these tests are mostly accurate and reliable, while a substantial portion believes they are not reliable (24%) or remains unsure (19%). Only 6 percent of adults say they have personally ever had genetic testing done , and the main reasons for doing so are split concerns about health problems for future children (35%), a desire to learn between more oncerns a bout future health problems for themselves about heritage or family history (25%), c (18 %), and some other reason (18%). The vast majority (81 %) of people who have had genetic testing done say the results were helpful to them. INTEREST IN TAKING A GENETIC TEST IN THE FUTURE in the past Despite the low percentage of Americans who have been tested , a majority (56%) of adults would be interested in taking a genetic test that indicated whether or not they were likely to develop cancer in the future. In particular, adults ages 30 - 64 are more likely to say they Alzheimer’s disease or interested in taking test for Alzheimer’s disease would be (62% ) compared to both younger adults (50% a of those 18 - 29) and older adults (47% of those 65+). A dults ages 30 - 64 were also more likely to say they would be interested in taking a test for cancer (63%) compared to both younger adults (48% of those 18 - 29) and older adults (47% of those 65+). Almost one in five adults (19%) say they or someone in their immediate family has ever been told that they carried a gene predisposing them to certain serious diseases, such as Alzheimer’s disease, cancer, heart disease, or sickle cell anemia. F IGURE 4 : Interest in taking a genetic test in the future to know yo ur likelihood of developing diseases Q. If a genetic test was available that could tell you whether or not you were likely to develop ... in the future, would you want to take the test or not? 56% Cancer 42% 56% Alzheimer's Disease 42% Yes No 5

7 WHAT DOES THE PUBLIC THINK ABOUT GENE THERAPY? addition to genetic testing, scientists are developing experimental ways to change human genes to treat In diseases through gene therapy. Gene therapy involves replacing a person’s genes to treat specific diseases, 3 emia, and some types of cancers. with the potential to treat diseases such as HIV/AIDS, sickle cell an Some oppose gene therapy because it has a risk of health complications, or they believe it may lead to unethical use or it is unnatural. Despite low familiarity with genetic technologies, a majorit y (59%) of Americans think the Food and Drug Administration (FDA) should approve gene therapy treatments for use in the United States, while 30 percent think they should not. Democrats and Republicans do not differ in their support for FDA approval of gene therapy treatments. : Government Regulation of Gene Therapy in the U.S. IGURE F 5 Q. Do you think the Food and Drug Administration should or should not approve gene therapy treatments for use in the United States? 59% Yes 30% No 3 “ Genome Engineering with Targetable Nucleases .” Annual Review of Biochemistry 83 : 409 – 439 . Carroll D. 2014. 6

8 DOES THE PUBLIC THINK THE GOVERNMENT SHOULD FUND RESEARCH ON GENE THERAPY ? More than two - thirds (64%) of adults say they think the federal government should fund scientific research on developing new gene therapy treatments . A majority of both Republicans (59%) and This finding tific research on gene therapy. shows Democrats (74 %) support federal funding for scien st treatments, which may be included in the 21 Century research and bipartisan support for gene therapy Cures Act in Congress that passed the House of Representatives in July 2015. F Gene Therapy Treatments IGURE 6 : Americans’ Views on Federal Research Funding for Q. Do you think the federal government should or should not fund scientific research on developing new gene therapy treatments? 64% Yes 30% No 7

9 CONCLUSION Even though the scientific community has yet to reach a consensus regarding the risks and potential benefits of genetic technologies , our poll finds that at this point in time, the public has definite views on these issues. W hile many in the public are lar gely un familiar with genetic technologies, they are generally interested in genetic testing, supportive of research and FDA approval of new gene therapy treatments, and opposed to changing the genetic characteristics of unborn babies, even to reduce their risk of developing certain serious diseases. Americans who say they are more familiar with these issues show higher approval for their research applications and govern ment funding. majority of Americans believe that scientists, physicians and other technological experts should decide A whether or not to allow changing the genes of unborn babies , while less than one in ten Americans believe that government officials and policy makers s hould decide. the recent the conclusions of the organizing committee of The views of the public are largely in line with National Academy of Sciences’ (NAS) International Summit on Human Gene Editing : while a majority favor gene therapy for clinical use a mong patients with serious diseases, they generally oppose genetic editing of the unborn. It is important to note that these findings could change over time, as national and international discussions on these issues continue to evolve. 8

10 METHODOLOGY results are based on polling conducted by and Harvard T.H. Chan School of Public Health. The Stat Representatives of the two organizations worked closely to develop the survey questionnaire and analyze the results of the poll. and Harvard T.H. Chan School of Public Health paid for the survey and related Stat expenses. The project team was led by Robert J. Blendon, Sc.D., Richard L. Menschel Professor of Health Policy and Political Analysis at Harvard T.H. Chan School of Public Heal th, and Gideon Gil, Managing Editor, Enterprise and Partnerships of . Harvard research team also included John M. Benson, Mary T. Stat Gorski, and Justin M. Sayde. Interviews were conducted with a nationally representative sample of 1,000 randomly selected adults, ages 18 and older, via telephone (including cell phones and landlines) by SSRS of Media, Pennsylvania. The interviewing period was January 13 – 17, 2016. The questions about ever having had a genetic test – ed 24, 2016. For those questions, the combin were also asked of a supplemental sample, January 20 sample was 1,489 U.S. adults. The data were weighted to reflect the demographics of the national adult population as described by the U.S. Census. When interpreting these findings, one should recog nize that all surveys are subject to sampling error. Results may differ from what would be obtained if the whole U.S. adult population had been interviewed. ed The margin of error for the total sample in the main poll is ±3.7 percentage points; for the combin sample, the margin of error is ±3.0 percentage points. Possible sources of non - sampling error include non - response bias, as well as question wording and ordering effects. Non response in telephone surveys produces some known biases in survey - derived - es timates because participation tends to vary for different subgroups of the population. To compensate for these known biases and for variations in probability of selection within and across households, sample data are weighted by household size, cell phone/ landline use and demographics (sex, age, race/ethnicity, education, and region) to reflect the true population. Other techniques, including random - digit dialing, replicate subsamples, and systematic respondent selection within households, are used to ensur e that the sample is representative. 9

11 /Harvard T.H. Chan School of Public Health Poll STAT The Public and Genetic Editing, Testing, and Therapy This survey was conducted for STAT and Harvard T.H. Chan School of Public Health via telephone by SSRS, an independent research company. Interviews were conducted via 17, 2016 January 13 – telephone (cell phone and landline) , among a nationally representative sample of 1,000 U.S. adults. Th e margin of error for total respondents is +/ - 3.7 percentage points at the 95% confidence level. Questions 3 through 5 were also asked of a supplemental sample, January 20 24, 2016. For those questions, the combined – sample was 1,489 U.S. adults, with a margin of error for total respondents of +/ - 3.0 percentage points at the 95% confidence level. More information about SSRS can be obtained by visiting www.ssrs.com GENETIC TESTING AND GENE THERAPY (Asked of split sample; n = 480) ST - 01. Recently, there have been some discussions in the news on genetic testing. Scientists have developed tests that can use the DNA sequence of people’s genes to help predict p certain diseases, as well as to whether an individual, or their future children, might develo diagnose whether they have certain diseases. Similar tests can also be used to identify where a person’s ancestors came from. How much have you heard or read about these discussions on genetic testing? Don’t Quite a Not Nothing know/ much lot at all Some Refused 24 19 31 26 -- (Asked of split sample; n = 480) ST - 02. Do you believe tests that use genes to predict diseases are mostly accurate and reliable, or not? No, not Don’t know/ accurate and Yes, accurate reliable and reliable Refused 19 57 24 10

12 (Asked in main poll and supplement; n = 1489) ST - 03. Have you personally ever had any type of genetic testing done, or not? Don’t know/ Yes No Refused 6 93 1 107) (Asked of those who have had genetic testing; n = ST - 04. What is the main reason you did this? Was is mainly because of...? % A concern about health problems for 35 your future children A desire to learn more about your 25 heritage or family history A concern about future health problems 18 yourself for Some other reason 18 4 Don’t know/Refused (Asked of those who have had genetic testing; n = 107) ST - 05. Were the results of your genetic testing helpful to you, or not? Don’t know/ No, not helpful Yes, helpful Refused 9 81 10 11

13 (Asked of split sample; n = 480) - 06. If a genetic test was available that could tell you whether or not you were likely to ST develop Alzheimer’s disease in the future, would you want to take the test, or not? Yes, would No, would not want want to take Don’t know/ to take the test the test Refused 56 42 2 (Asked of split sample; n = 480) ST 07. If a genetic test could tell you whether you or not you were likely to develop cancer - in the future, would you want to take the test, or not? Yes, would No, would not take want to take want to Don’t know/ the test the test Refused 56 42 2 (Asked of split sample; n = 480) ST In addition to genetic testing, scientists are developing experimental ways to change 08. - human genes to treat diseases, often called gene therapy. Gene therapy involves replacing a es such as person’s genes to treat specific diseases, with the potential to treat diseas HIV/AIDS, sickle cell anemia, and some types of cancers. Some people oppose gene therapy because it has a risk of health complications, or they believe it may lead to unethical use or it is unnatural. Do you think the Food and Drug Administrati on should or should not approve gene therapy treatments for use in the United States? Yes, they No, they Don’t know/ should not should Refused 11 59 30 (Asked of split sample; n = 480) ST - 09. Do you think the federal government should or should not fund scientific research on developing new gene therapy treatments? Yes, they No, they Don’t know/ should should not Refused 6 64 30 12

14 GENETIC CHANGES TO UNBORN BABIES (Asked of split sample; n = 520) ST - 10. Recently, there have been discussions among experts on the potential for changing the genetic characteristics of unborn babies to improve their health, physical traits, or intelligence. discussions? How much have you heard or read about these Don’t Quite a Not Nothing know/ Some much Refused at all lot * 23 27 42 8 As you may know, there is an ongoing controversy over these new scientific discoveries. Some scientists argue that parents should have the right to change the genes of their unborn babies to prevent certain serious diseases such as Huntington’s disease, cy stic fibrosis, or some types of muscular dystrophy. In addition, some also believe parents should be able to change their unborn babies’ genes to select desired characteristics such . as intelligence, or physical traits such as athletic ability or appearance On the other hand, some scientists argue that changing the genes of unborn babies is an unsafe experiment with uncertain consequences, these genetic changes will be passed on to future generations, they may cause irreversible harm, and they could lead to a society of genetic “haves” and “have nots.” (Asked of split sample; n = 520) - 11a. Do you think that changing the genes of unborn babies to reduce their risk of ST developing certain serious diseases should be legal or should be illegal? Should be Don’t know/ Should be illegal legal Refused 26 65 9 (Asked of split sample; n = 520) 12. Do you think that changing the genes of unborn babies to improve their intelligence - ST or physical characteristics should be legal or should be illegal? Should be Refused/ Should be legal illegal Refused 11 83 6 13

15 (Asked of split sample; n = 520) - 13. ST For decisions on whether or not to allow changing the genes of unborn babies to improve their health, physical traits, or intelligence, do you think we should leave it up to scientists, physicians, and other technological experts, or do you think we shoul d leave it up to government officials and policy makers? Scientists, physicians, Government Don’t officials and and other Other/ policy Neither technologic know/ (vol) al experts makers Refused 53 9 31 7 (Asked of split sample; n = 520) ST - 14. Do you think the federal government should or should not fund scientific research on changing the genes of unborn babies to reduce their risk of developing certain serious diseases such as Huntington’s disease, cystic fibrosis, or some types of muscular d ystrophy? Don’t know/ Refused Should Should not 51 5 44 (Asked of split sample; n = 520) ST - 15. Do you think the federal government should or should not fund scientific research on changing the genes of unborn babies that aims to improve their characteristics such as intelligence or physical traits such as athletic ability or appearance? Don’t know/ Should S hould not Refused 4 14 82 (Asked of total sample; n = 1000) ST - 16. Have you, or has anyone in your immediate family, ever been told that you carried a gene that predisposed you to certain serious diseases, such as Alzheimer’s disease, cancer, heart disease or sickle cell anemia? Don’t know/ Refused No, not told Yes, told 19 80 1 14

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