It’s April 25: DNA Day!
NLM is celebrating by making our Genetics Home Reference easier to use. We have a new look with better navigation, educational images, and mobile responsive design.
To learn more about the site, NLM in Focus talked with the coordinator of the site, Stephanie M. Morrison, MPH.
Why was Genetics Home Reference originally created?
We knew we wanted to make information from the Human Genome Project and other genomic research accessible to the general public who need information about how genetics impacts their health. The information was just too important not to make it widely available.
We originally launched in 2003 with summaries of 19 health conditions and 16 genes. Today, we cover more than 1,100 health conditions, 1,300 genes, all the human chromosomes, and a primer that covers the fundamentals of human genetics.
Why do you think so many people consult Genetics Home Reference?
More than a decade after the Human Genome Project ended, people still need information about genetics written in understandable language.
Researchers at NIH and worldwide continue to make exciting discoveries about new genetic diseases, and they’re working to better understand the genetics of health conditions we’ve known about for a long time, such as hearing loss and celiac disease.
People look to us to explain the data simply and accurately.
Genetics cuts across virtually every aspect of science and medicine, and the field pops up in curricula practically from kindergarten through higher education. Who are your typical users and what are they trying to find?
Our target audience is people without a science or medical background—particularly people with genetic conditions and their families.
According to a survey we’ve been running since 2014, patients and their families and friends comprise about one-third of all our visitors. However, we’re also popular with health professionals and researchers, who make up another one-third of site visitors, and with students and teachers, who represent about a quarter of all visitors.
More than half of our users say they visit to learn more about a particular genetic condition. Other people want to learn more about a specific gene and about genetics in general.
We’re particularly glad that nine out of 10 users report that they found the information they needed on Genetics Home Reference.
What else do you hear from people who use the site?
We receive so many encouraging and positive messages. The team really appreciates these! It’s great to be a valuable resource for both patients and professionals.
But we also receive constructive feedback we use to improve the site. Our new look and feel reflects that. People regularly ask for new images and graphics, so we’ve added several hundred. And we’ll be adding more.
We’re proud to be an authoritative resource on genetics. The site appeared on the MTV series “Teen Mom 2,” when a mom was looking for information about her daughter’s potential diagnosis. Genetics Home Reference has also been linked in online medical stories from the Washington Post, the New York Times, Time, ABC News, Yahoo Health, and other outlets.
We work hard to provide accurate background information, so it’s gratifying when we know we’ve helped.