ASHG strives towards a world in which people everywhere realize the benefits of human genetics and genomics research. According to the ASHG public opinion survey released in 2020, while most of the public are curious and hopeful about genetics research, a portion is also cautious and there are still misunderstandings around basic genetic facts. As a result, a working group was created made up of members of the Public Education and Awareness Committee (PEAC), its liaison to the Diversity, Equity, and Inclusion Task Force, and other committees. They met through 2020 and 2021 to take on the responsibility of creating and maintaining a key messaging framework that could be adjusted for use with multiple communities, with an emphasis on people that are underserved in health care and/or underrepresented in research.
“The aim of this working group was to develop and maintain key points that can be adjusted for use with all communities and address their specific concerns about human genetics research. The group met with marketing agency Finn Partners and its Senior Vice President Kenneth Sain to discuss important basic facts about genetics, shared values among all audiences, challenges which pose a threat to these shared values, and solutions to these challenges. Messaging frameworks were developed from this discussion and were tested through qualitative research conducted in the form of one-on-one in-depth interviews with a select group of ASHG stakeholders and influencers who were recommended by the working group. The result of these interviews was larger message frames and specific message language.”
Maurice Godfrey, PhD
There are constant strides and discoveries being made in the field of human genetics and genomics, as demonstrated during the 2021 ASHG Annual Meeting. It is important for all communities to know how they contribute to our shared health and humanity and how they further these discoveries. Keeping this goal in mind, the following four message frameworks were developed:
- Genetics research is important and improves diagnostic accuracy and enables new treatments that could improve your health and the health of all people.
- Your participation in research can help make genetic therapies more effective for all patients.
- Participation is voluntary and researchers are dedicated to protecting privacy, earning trust, and respecting diverse communities.
- Efforts to increase diversity in genetic research must share opportunities and benefits of participation as well as acknowledge health disparities and past harms.
“These message frames are a concrete way for researchers, practitioners, and all geneticists to begin discussions with all communities about the benefits of human genetics and genomics research. During a time of heightened scientific awareness in society, we see this project as a way to create further understanding and begin great conversations and partnerships between the science community and members of the public who may have been curious about genetic research. With the increase of scientific awareness has come misinformation and caution as well, and in these cases the message frames can serve as a way to acknowledge the past, communicate the priorities and expectations of science research in its current state, and move together towards an equitable and more informed future.”
Ken Ramos, MD/PhD
Incoming PEAC Chair
Drs. Godfrey and Ramos presented this report outlining the message frames, the process taken by the working group, and proposed next steps to the ASHG Board of Directors in November. The Society will use these frames to gain insight from additional stakeholders as well as explore various communication mechanisms for engaging various communities.