Janine Lewis is a senior project manager with ICF, providing project management and subject matter expertise in the areas of genetics, rare diseases, and cancer. She holds a bachelor's degree in biology from the University of Tennessee, a master's degree in human genetics from Sarah Lawrence College, and a Project Management Professional certification. Before assuming the program director role for the National Cancer Institute’s Physicians Data Query (PDQ) work in 2019, she oversaw the National Center for Advancing Translational Sciences Genetic and Rare Disease Information Center (GARD) program since it was awarded in 2002.
Janine worked at ICF on the GARD program for 10 years. Currently, in addition to the PDQ work, she oversees other work at ICF including the Genetic Home Reference. She is the co-chair for the genetic counseling working group for the Undiagnosed Diseases Network International, focused on patient and family engagement to consider information, psychosocial, resource, planning, research participation, and networking needs for people living with a rare or undiagnosed disease. Janine is also a member of the Inter-Society Coordinating Committee for Practitioner Education in Genomics (ISCC) and the ISCC Rare Disease working group. She has worked as a genetic counselor in several different settings including Columbia Presbyterian Medical Center, a large academic medical center, Massachusetts General Hospital in the Neurogenetics Research Core, a small perinatologist private practice, and a genetics umbrella advocacy organization, the Genetic Alliance. She has co-authored a number of articles in peer-reviewed journals including Nature Genetics and Translational Sciences of Rare Diseases, and has also co-authored a book chapter regarding the Impact of Tuberous Sclerosis Complex on the Family and Genetic Counseling Issues.