– Seventy-seven percent of Americans indicate positive feelings about human genetic research, with individuals expressing interest in what genetics can tell them about human history and heritage, according to a survey from the American Society of Human Genetics (ASHG) in partnership with Research!America.
Eighty-four percent of Americans agree that further research is needed in human genetics, and 74 percent of those surveyed said that increased federal funding for research is important.
Most respondents also believe that genetics research will be important for improving their families’ health, with 77 percent agreeing that this area of study will play a critical role in boosting their families’ wellbeing.
The nationwide survey consisted of an online survey of 1,100 American adults, plus an additional 775 adults for minority population oversampling. The results show that people are interested and optimistic about human genetics, even as knowledge gaps persist.
“When it comes to human genetics, the US 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.”
Seventy-one percent of respondents feel positive about the possibility that their physicians will have access to their genetic information. Many participants are hopeful that providers will be able to use this information to find cures for diseases like Alzheimer’s or cancer (78 percent), as well as conditions like sickle cell disease, cystic fibrosis, or muscular dystrophy (60 percent).
Although many Americans are excited about physicians having access to their genetic information, the survey found that consent and privacy are critical for participation in genetic research.
Sixty-six percent of respondents would be more motivated to participate in genetic research if they knew their information would be shared only with their consent, and that their data would be kept private. Sixty-three percent oppose the use of genetic information to set insurance coverage rates, and 64 percent are against the required disclosure of genetic information for corporate wellness programs.
Respondents also indicated that insurance coverage would play a key role in their decision to participate in genetic research. Seventy-seven percent said they think insurance should cover genetic tests their doctor believes are necessary for their health.
The survey results also showed Americans still have some gaps in knowledge when it comes to genetics research. Just 41 percent of participants know that humans share more than 99 percent of our DNA, and only 45 percent know that gene therapy can’t create genetic changes that are passed on to future generations.
Additionally, the public is still largely unfamiliar with key areas of genetics research, like precision medicine. While 71 percent of respondents had heard about human genetics in the past year, just one-third of participants had heard about precision medicine.
The results indicate a need for continued, improved public information about the field of genetic research and key areas of study. With most Americans interested and excited about the potential of genetics, continued education and engagement about this topic will enhance the use of genetic data in healthcare.
“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.”
Further research in genetics will promote its use and advantages to people of all backgrounds.
“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.”