Genomic Health Literacy

Posted by Carolyn Martin on October 9th, 2017 Posted in: Health Literacy
Tags: genetics, genomics, health literacy

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Part 2 of our Health Literacy Month series-

Genetics has become more prominent in the news in recent years. Sometimes it looks like great scientific advancement and other times it can look a little unsettling and seem like something out of science fiction. Genomic health literacy is becoming increasingly important as precision medicine, pharmacogenomics, and direct-to-consumer genetic testing and other genetic associated topics are emerging at the intersection between health and genetics, and consumers need access to information about these and other related topics in a manner that is understandable.

It has been noted that many Americans do not have the genomic literacy levels needed to start comprehending what genetics has to do with health. The general public’s understanding of basic biology especially in regards to genetics and understanding of mathematical concepts in regards to probability theory, risks and statistics is no-where near adequate to where they can comprehend the recent scientific advances and achievements especially in regards to the genomic component. Also, the public needs to consider the role that genomics plays in healthcare decision making, lifestyle changes, family history as well as the social and ethical aspects. If the public cannot understand this then its impact on their health behavior may be little to none.  Many people who have lower genomic health literacy may also have low health literacy or low literacy in general.

You may have noticed the use of the words genetics and genomics. These two words are often used interchangeably but they actually mean two different things and this can be confusing. Genetics is the more familiar term. It refers to the study of specific, individual genes and their role in inheritance. Genomics refers to the study of all the genes in an organism. But don’t get too caught up in the semantics. The important thing is to know where to go to get some easy to understand information about genetics.

Whether you work in healthcare and are wanting to provide patients with information about genetics and their health, or at a school wanting to provide educational resources for your students or a librarian who has a patron seeking information about participating in a research study focusing on genetics, it is important to provide appropriate and accurate information.

• GeneEd was developed and is maintained by the National Library of Medicine and National Human Genome Research Institute. This resource is for students and teachers in grades nine to twelve to learn genetics. Links are provided to a variety of resources and learning tools such as experiments, interactive tutorials, games, and research articles enable teachers to reinforce concepts and supplement curricula.
• The National Human Genome Research Institute (NHGRI) is dedicated to the application of genome research to human health, including the ethical, legal, and social implications of genome research.  The institute provides an array of information for the public connecting genetic information basics to health through family history, research being done in the field, and disease information. Users will also find information that raises awareness of societal issues such as privacy, discrimination, and regulation of tests. Educators will find links to resources in NIH as well as to other trusted resources, with educational tools for use in the classroom and for students when writing research papers or preparing projects.
• The National Library of Medicine created Genetics Home Reference as a consumer resource to find information about health conditions with a genetic component. This resource is more than just about finding information about specific genetic conditions. The “Help Me Understand Genetics” section provides the basics about genetics for newly diagnosed patients and their families and can be an educational resource to learn about specific genes, chromosomes, and their roles in human health for middle and high school students.
• MedlinePlus includes several health topic pages on genetics-related information such as genetic conditions, genetic testing, and gene therapy. Text-word searching will result in a variety of genetic and genomic-related information. However, specific health condition topic pages can also include a section specifically addressing the genetic aspects of the health condition. Remember, health conditions with a genetic component may or may not include specific developmental disabilities typically associated with genetics.