New APHL book covers
50 years of innovation
and dedication

Available in the digital edition and mobile app. Did you miss the 2013 Joint Meeting of the Newborn Screening and Genetic Testing Symposium and the International Society for Neonatal Screening? See what you missed! Go online or click here to view a photo slideshow. dIgITal eXTra

Newborn screening saves more than 12,000 American babies from death or permanent disability each year. Public health laboratories are responsible for 97 percent of this screening. Yet the general public often doesn’t understand how newborn screening is done or realize its value. Even within the healthcare system—and in the public health laboratories themselves—there can be a dearth of knowledge or recognition. In the 50th year since Dr. Robert Guthrie invented the dried-blood spot test and the first state instituted mandatory screening for PKU, APHL decided to help change that situation.

As part of the 50th anniversary of newborn screening activities, APHL has published “The Newborn Screening Story: How one simple test changed lives, science, and health in America,” a 100-page book packed with stories and photos from parents, from the public health labs, from the healthcare system, and from the political and advocacy worlds. (See pdf of book at www.50yearssavingbabies.org.)

“We had three big goals with this: to raise awareness, to educate and to celebrate,” says Scott Becker, APHL executive director. “There are a lot of scholarly and technical resources for laboratorians out there, but not many publications that show the dedication and innovative thinking that goes on behind the scenes, in a way parents—and legislators—can understand.” Lab technicians explain what drew them to newborn screening; parents and nurses praise the laboratory professional who made one more call; eminent geneticists and laboratory researchers survey how technology and practice have evolved and advanced.

“We see this book as having a lot of value in a classroom or in a doctor’s office,” Becker says. “But it’s also the kind of thing you can hand to people when they have trouble understanding what it is you do, exactly.” The plan is to present a copy to each member of Congress, in the hope of raising their awareness of the importance of public health laboratories to the nation’s families.

To create “The Newborn Screening Story,” APHL gathered an expert panel of newborn screening laboratory leaders, advocates and policy workers to brainstorm and share what they felt were the most important achievements and challenges of the past 50 years. The expert panel also dug into their files for historical material, ranging from news clippings tucked in scrapbooks to landmark supplements from scholarly journals.

APHL communications team members located and interviewed parents and care-givers who wanted to share their stories, as well as people from the labs who were there in the early days of screening. Surprises emerged over the months of distilling and shaping the information: from stories of individual heroism to new understanding about disabilities, follow-up care and the effects of changing technology.

Complimentary copies will be given to people and organizations throughout the newborn screening system. Each state public health laboratory will receive a total of 10 books, with 5 copies sent to the newborn screening lab director and 5 to the newborn screening follow-up program. APHL also will arrange for purchase of copies in bulk.