As research in genomics continues to evolve, advancements made in the lab are demonstrating the potential to revolutionize everyday clinical health care. Often referred to as precision health care, the information from a patient’s genetic profile can be used to better prevent, treat, and predict the course of a disease.
However, the large amount of genomic information these new technologies provide has a range of personal, familial, and societal implications. For example, complex genomics data can be difficult to understand, and it can be expensive to generate.
New research, funded by Genome BC, seeks to address some of these issues by asking the public about the value they attach to genomic knowledge and its outcomes. This initiative will provide scientific evidence characterizing the benefits that innovations in precision health provide to society. This knowledge can in turn be used to inform decisions in both research and policy development based on an understanding of which precision health technologies provide the most benefit to patients and society, given their cost.
“By developing a clearer understanding of what aspects of genomic knowledge and precision health is valued by the public, we will be able to provide decision-makers with key evidence from public engagement to support health policy and practice.” said the project’s leader, Dr. Dean Regier, Scientist, Cancer Control Research, BC Cancer. “There is a critical need to build evidence based on what, and to what degree, society values the benefits, harms, and expected outcomes of precision health.”
The research aims to provide scientific evidence of the value placed on precision health by the public that will help deliver healthcare that is affordable and consistent with societal expectations.
“Generally speaking when people think of genomics research, they tend to focus on the biology.” said Sally Greenwood, Genome BC’s VP, Communications and Societal Engagement. “However, it’s equally important to evaluate the societal issues that arise as a result of this amazing technology. This is as true for the application of genomics in the natural resource and agrifood sectors as much as it is in precision health care.”
This project, Citizens’ preferences for next generation sequencing technologies in biomedical research and medicine, is valued at $50,000 and was funded through Genome BC’s Societal Issues Competition.
About Genome BC’s Societal Issues Competition
Genome BC created the Societal Issues Competition as a way to recognize the need for stand-alone research projects that identify and study the societal issues that emerge from genomics-based innovations. Applied social sciences and humanities research, encompassing the diverse areas of study relevant to genomics research, is a necessary aspect of the genome sciences. This may include, for example, researching broader themes of societal importance such as genetic discrimination and public perspectives of genomics application by sector, developing effective practices and policies for uptake of genomic-based applications, identifying when uptake would not be appropriate or examining cross-cutting themes related to genomics that may be important to society.