Respondents Want Confidence in Data Privacy, Have Some Knowledge Gaps
As genetics and genomics knowledge expands rapidly throughout research, medicine, and society, Americans are excited and optimistic about this area of research and its emerging health applications, according to a new survey released today by the American Society of Human Genetics (ASHG) in partnership with Research!America.
The survey found the large majority of Americans agree genetic knowledge will be important to their own health and their families’ health. Americans agree that more research is needed in human genetics, and that increased federal funding for that research is important. The survey also confirms the importance placed on confidentiality and security of research data, addressing Americans’ views regarding genetic testing coverage, and highlighting opposition to the use of genetics for insurance coverage or rate-setting. Moreover, Americans express great curiosity about genetics, as well as interest in what it tells us about human history and our common heritage as a species, even as knowledge gaps persist.
The nationwide survey, conducted by Zogby Analytics, December 2019, consisted of an online survey of 1,100 American adults, plus 775 additional adults for minority population oversampling. The margin of error was +/- 3.1 percent. The margin of error was higher for subgroups.
ASHG undertook the survey following a broad review of existing recent public opinion polls and academic research findings that covered a wide array of genetics and medical research topics. That review is also being released as a companion resource, providing additional insights and raising important questions regarding public opinion on a broader set of questions than possible to be covered in the ASHG/Research!America survey.
Additional highlights from the ASHG/Research!America survey include:
- Asked to select adjectives expressing their views on genetics research, respondents’ top five selections were “Curious” (59 percent), “Hopeful” (53 percent), “Amazed” (42 percent), and “Optimistic” (42 percent), followed by “Cautious” (38 percent).
- Americans believe it is positive that researchers will use genetics to find cures for key diseases like cancer or Alzheimer’s (78 percent); that physicians will be able to use genetic information to inform their health care (71 percent); that people will learn “surprising information” about their heritage or backgrounds (69 percent); and that it will be possible to change genes in embryos to prevent severe diseases like sickle cell disease, cystic fibrosis, or muscular dystrophy (60 percent).
- Thirteen percent report having taken a direct-to-consumer genetic test; 8 percent had a genetic test through a hospital or research center; 5 percent had received genetic counseling; and 5 percent had participated in research requiring a blood or saliva sample.
- Eighty-four percent agree that more research is needed in human genetics, and 74 percent reported that increased federal funding for that research is important.
- More than 60 percent report that assurances of data confidentiality and privacy would be the key decision factor in their participation in research, along with the ability to help a loved one’s health or their own.
- Thirty percent report having heard of “precision medicine,” a fast-paced area of research that is creating new diagnostic and treatment options based on an individual’s genetic composition.
“When it comes to human genetics, the U.S. public is supportive of research, believes more research is needed, and believes it’s important to national health and their families’ health,” said ASHG President Anthony Wynshaw-Boris, MD, PhD. “It’s exciting how curious and hopeful Americans are about this fast-paced area of research. That said, the survey shows there is still important work to do in educating the public on some genetics basics and how it might benefit them through applications like personalized medicine. It is rewarding to know they would participate in research that could help themselves or a loved one, but they also want assurances about privacy and confidentiality of that research data.”
Wynshaw-Boris said the Society is also committed to realizing a world in which people everywhere realize the benefits of genetics and genomics research. “Lower awareness and higher skepticism among underserved populations reflect legitimate historic experience with research that we need to understand and the need to improve engagement and education with diverse populations,” he said. “Overall, the poll confirms that more can be done to reinforce the progress and potential of genetics research, while also educating the public about rigorous privacy practices and laws already in place for U.S. federal research, and our growing ability to evaluate risks or resilience for common conditions such as heart disease, dementia, diabetes, or mental illness.”
“Time and again, the public tells us they value medical research,” said Research!America President & CEO Mary Woolley. “Americans believe in the hope research presents to improve the health and well-being of individuals, families, and communities. As a nation, we must step up and invest robustly in research to find the solutions to what ails us. “
In coming months, ASHG will increase communication about the value of human genetics to the public, including webinars, papers, and public information and engagement on topics related to current advances and issues in human genetics. This is part of the organization’s goal in the next three to five years to serve as a reliable source for public information on the topic of human genetics.
“It is an exciting time for human genetics and genomics, and emerging knowledge is speeding discovery and applications in research, medicine, and society,” Wynshaw-Boris said. “With these advances, we seek to build a future where people everywhere benefit from human genetics and genomics research.”
The American Society of Human Genetics (ASHG), founded in 1948, is the primary professional membership organization for human genetics specialists worldwide. The Society’s nearly 8,000 members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses, and others who have a special interest in the field of human genetics.