About ICF

Janine Lewis

Senior Project Manager, Health
Janine is a project management expert with experience in genetics, rare diseases, and cancer.

Janine oversees MedlinePlus Genetics, formally called the Genetic Home Reference. She is also the program director for the National Cancer Institute’s Physicians Data Query (PDQ). Janine is the co-chair for the genetic counseling working group for the Undiagnosed Diseases Network International. In this role, she focuses on patient and family engagement to consider information, psychosocial, resource, planning, research participation, and networking needs for people living with rare or undiagnosed diseases. Janine is also a member of the Inter-Society Coordinating Committee for Practitioner Education in Genomics (ISCC) and the ISCC Rare Disease working group.

Previously, Janine oversaw the National Center for Advancing Translational Sciences Genetic and Rare Disease Information Center. She also worked as a genetic counselor in various settings, including Columbia Presbyterian Medical Center, Massachusetts General Hospital in the Neurogenetics Research Core, and the Genetic Alliance. Janine is the co-author of several articles in peer-reviewed journals, including Nature Genetics and Translational Sciences of Rare Diseases. She also co-authored a book chapter regarding the Impact of Tuberous Sclerosis Complex on the Family and Genetic Counseling Issues.

Areas of expertise
  • Lewis, J., & Browley, S. (2020, February). Next steps roadmap for patients with rare or undiagnosed conditions. Presented to the Genetic Counseling Work Group of NIH Undiagnosed Diseases Network International, Nijmegen Netherlands.
  • Vasilevsky, N. A., Foster, E. D., Engelstad, M. E., Carmody, L., Might, M., Chambers, C., … Haendel, M. A. (2018). Plain-language medical vocabulary for precision diagnosis. Nature Genetics, 50(4), 474–476.
  • Lewis, J., Snyder, M., & Hyatt-Knorr, H. (2017). Marking 15 years of the Genetic and Rare Diseases Information Center. Translational Science of Rare Diseases, 2(1–2), 77–88.
  • Morgan, T., Schmidt, J., Haakonsen, C., Lewis, J., Della Rocca, M., Morrison, S., … Kaphingst, K. A. (2014). Using the internet to seek information about genetic and rare diseases: A case study comparing data from 2006 to 2011. JMIR Research Protocols, 3(1), e10.
  • Rance, B., Snyder, M., Lewis, J., & Bodenreider, O. (2013). Leveraging terminological resources for mapping between rare disease information sources. Studies in Health Technology and Informatics, 192, 529–533.
  • Lea, D. H., Hyatt-Knorr, H., Lewis, J., & Feero, W. (2012, February 27). Rare and undiagnosed diseases: Where pediatricians can go for reliable information and resources.