Genetic Literacy Is a Public Health Imperative

We live in an age shaped by genetic biotechnology, yet an alarming number of Americans remain unequipped to understand and apply the basic concepts of genes and heredity. That knowledge gap, referred to as genetic illiteracy, is not merely academic. It affects how we as consumers, patients, parents, and policymakers grasp information and make decisions that carry profound personal and societal consequences. 

Genetics is part of the modern social, commercial, and clinical landscape. Everyday food products are advertised as “non-GMO” (often such labeling is mere marketing, given that only a select few genetically modified food items are available.) The COVID-19 pandemic brought mRNA vaccines into the public consciousness. Gene-editing therapies like the CRISPR-based exa-cel are now available to patients with certain genetic diseases. Genetic testing is prevelant: clinical screening, such as for  cancer risk or birth defects, is commonplace. And consumers increasingly elect to give their genomic data to direct-to-comsumer genetic testing companies, who may promise anything from helping clients build “generational health” and extend their lifespan to genetically optimizing their babies. As the applications of genetics become more widespread, one’s ability to make informed decisions about these technologies has become a core competency.

Genetic Illiteracy in the General Population

Researchers often score genetic literacy as a measure of three dimensions: familiarity with basic genetic terms and concepts; the ability to interpret genetic information; and the ability to apply genetic information to decision-making in personal, societal, and professional contexts. Term and concept familiarity is generally the easiest to achieve, while the ability to apply genetic information is the most difficult. 

Widespread media coverage of genetic topics has bolstered public familiarity, so much so that phrases like genetic testing and gene editing readily call images to mind. However, merely recognizing a term is insufficient to equip a person to interpret and apply it in informed decision-making. Media exposure to genetics-related topics may even make some artificially confident in their abilities to successfully apply genetics in their daily lives. Moreover, term and concept familiarity still remains inadequate as a public health concern. For instance, more than 30 percent of a national sample indicated general unfamiliarity with genetic concepts. Such a finding is unsurprising, given that only 25 percent of high school teachers report teaching contemporary issues in genetics.

The Consequences of Genetic Illiteracy 

Reduced genetic literacy negatively impacts informed decision-making, including the inability to read, process, and recall genetic information, such as understanding one’s own risk of developing or passing on a genetic disease. Genetic illiteracy can also make consumers vulnerable to misinformation, including the beliefs that GMOs are unhealthy or toxic, that mRNA vaccines genetically manipulate the human body and should be avoided, or that sharing your genomic data with a private company imposes no risk.

Genetic illiteracy likewise carries emotional consequences. Patients who do not understand general medical information often experience feelings of inadequacy, anxiety, or reluctance to reveal their confusion. Similarly, patients unable to understand genetic concepts and terms may struggle to process their care options, ask meaningful questions, or recall important information afterward. Furthermore, patients may face adverse health outcomes from avoiding care or denying their lack of understanding during a health care encounter.

Deficits in genetic literacy can also distort public debate and government action. When lawmakers and agency officials misunderstand the science, they risk making funding, regulatory, and public health decisions on flawed premises. For instance, last year’s federal efforts to cut grant funding to LGBT-related research was misapplied to projects involving transgenic mice (that is, mice whose genomes have been altered to include foreign genetic material for scientific study.) If you thought scientists were studying transgender mice, you share something in common with the President.

A Path Forward

Various sources exist to expose the general population to genetics; some are seen as more trustworthy than others. The public routinely points to physicians and clinicians as preferred sources of information. Indeed, effective patient-provider communication helps patients navigate medical complexity. Genetic counselors play an underutilized role in health care teams by communicating with patients and enhancing the genetic literacy of other providers. Yet the number of genetic counselors has not kept pace with the rapid expansion of genetic care, and non-genetic specialists are increasingly called on to communicate genetic concepts to patients. Yet non-specialist providers may have their own deficits in genetic literacy. For instance, 86 percent of surveyed providers report needing assistance to help interpret clinical genomic data. Moreover, a concerning number of medical students (around 85 percent) self-report insufficient genetics knowledge. Only 53 percent of a sample of first-year pathology residents interacted with a medical geneticist during their medical training. One long-term approach to improve public genetic literacy is thus to integrate genetic competencies into the general curriculum and continued education of health care professionals, triggering a cascade of knowledge for public audiences.

However, patient-provider interactions are not the only means for genetic literacy to increase in the public. Although providers have the benefit of being trusted sources, patient-provider interactions are sporadic. To improve the public’s genetic literacy, a successful public health communication campaign should thus be backed by variable means that can reach people outside of the healthcare context. This may include expanding the roles of genetic counselors and community health workers to tailor resources for patients and the public. These experts can elicit communities’ informational needs and craft accessible and multi-channel information resources about genetics. Stakeholder groups and federal agencies such as the FDA, USDA, and FTC may also develop public-facing resources or regulate how certain genetic technologies can be marketed. Likewise, media venues may help distribute accurate information to the public. Indeed, sources like the internet or television hold strong influence over the public’s conception of genetic biotechnology. Additionally, increasing the quality and breadth of genetics education in high schools, such as covering biotechnologies like CRISPR, would support genetic literacy in adolescents. If genetic literacy is to be properly addressed as a public health imperative, all of these approaches are necessary.