Roosevelt Institute | Cornell University

Why Genetics Oriented Education Is Important

By Girisha AroraPublished January 1, 2017

With genetic testing becoming more consumer friendly, a gaping hole is being revealed current education : it does not have the capability to equip people with an understanding of what is an inseparable part of themselves - their DNA.

A sense of trying to grasp control of the unknown drives us to minimize risk as much as possible. The latest phenomenon that follows this trend is genetic testing. The advent of companies like 23andMe and Pathway Genomics that offer a comprehensive test for under a hundred dollars has allowed millions of people sequence their DNA to know more about their tendency to contract deleterious diseases such as Huntington's Disease, Alzheimer's or type 2 diabetes. However once people know whether their risk is high, low or average - the process of interpretation is where the mismatch of information begins.

Genetic testing became commonplace once the human genome was sequenced by the turn of the century . While the first tests sanctioned in the medical community were physician directed, companies like 23andMe opened it up to direct-to-consumer testing and made the information surrounding this sensitive data more readily available. Now, there are lesser than 3000 genetic counselors who must be able to keep up with the millions of people who are trying to understand the raw data that these tests provide to them.

An individual who participates in one of these tests gets the data about their ancestry and their perceived risk for approximately 30 diseases, all of which has been obtained by a simple saliva swab. They receive this information by getting a simple pdf with graphs and statistics that tell individuals what their risk is. While some companies offer genetic counseling, most do not, and this leads to individuals often evaluating the information in isolation. However, this can in a way defeat the point of carrying out testing in the first place. For example, if an individual receives the remark that he is at a ten times higher risk than the rest of the population for contracting a particular disease - this information in isolation can be shocking and a cause of worry. It is only if the person is aware of the fact that the average is actually 0.3%, so an increased risk would only leave him at 3%, which means a 97% chance of him not contracting the disease. If presented in this way, the information is more reassuring but unfortunately that is not the case.

The case in favor of more education about genes and population genetics is not a proposition to  make children in high school learn the averages of each disease so that are placated when they get themselves tested. Instead, it is an argument to increase awareness of the positives and negatives of such testing, so that when the time eventually comes for individuals to test themselves, they are well equipped to navigate the pros and cons. Right now, many people are doing it out of curiosity, and to gain information that a family pedigree will be able to easily predict with close accuracy. Thus, if the education was in place - money would not be wasted on tests that were not entirely necessary.