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 this week by the American Society of Human Genetics (ASHG) in partnership with Research!America.
The survey finds the large majority of Americans agree genetic knowledge will be important to their own health and their families’ health. Americans also 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. 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.
The nationwide survey, conducted by Zogby Analytics in 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.
Additional highlights from the ASHG/Research!America survey include:
- Asked to select adjectives expressing their views on genetics research, respondents’ top five selections are “Curious” (59%), “Hopeful” (53%), “Amazed” (42%), and “Optimistic” (42%), followed by “Cautious” (38%).
- Americans agree that continued research is important and believe that the U.S. is not making enough progress in genetic research to date. A strong majority of people surveyed agree (84%) that more research is needed in human genetics specifically, and 74% of Americans report that increased federal funding for genetic research is important.
- Both of these strong majorities hold across all ancestry subgroups surveyed, though African Americans agree that more research in human genetics is needed than respondents of other backgrounds (76% vs. 84% of Hispanics, 88% of whites, and 89% of Asian respondents).
- Survey participants believe genetic research is critical to improving their families’ health with 77% agreeing that it is important.
- More than 60% 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.
- A total of 13% report having taken a direct-to-consumer genetic test; 8% had a genetic test through a hospital or research center; 5% had received genetic counseling; and 5% had participated in research requiring a blood or saliva sample.
- 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.
“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.