The use of technology in a healthcare setting can allow a patient, without local access to geneticist, to receive a genetics assessment and it can allow a primary care provider to contact a genetics provider to become better equipped to provide care to an individual with a complex genetic disorder. NCC will work with the seven RGNs, NGEFC, HRSA, and national partners (such as the American Telemedicine Association) to support training of genetics and non-genetics provider in telemedicine tools and work to develop health outcome measures that demonstrate the utility of telemedicine services.

Telegenetics Workgroup Information


Peter Antal, PhD
Leah Burke, MD
Rosemarie Smith, MD


Katharine Bisordi, MS, MGC
Kathy Chou, PhD
Carol Greene, MD
Alissa Terry, MS, CGC
Beth Vogel, MS, CGC


Hans Andersson, MD
Elizabeth Krupinski, PhD
Theresa Pringle, MPH
Ami Rosen


Kaitlin Justice, MPH
Jane Pilditch, MPA


Shobana Kubendran, MBBS, MS, CGC
G. Bradley Schaefer, MD
Lori Williamson Dean, MS, CGC, LGC


Dale Alverson, MD
Kathryn Hassell, MD
Annette Lara, MBA
Janet Thomas, MD


Lila Aiyar, MS, CGC
Sylvia Mann, MS, CGC (Chair)
Michelle Takemoto, MS, CGC

National Genetics Education and Family Suppoort Center

Alisa Bentley
Ashley Crowley
Joel Lopez


Soohyun Kim, MPH, CPH
Debi Sarkar, MPH
Joan Scott, MS, CGC

Telehealth Resource Center

Danielle Louder
Lloyd Sirmons
Katharine Wibberly, PhD


David Flannery, MD
Alisha Keehn, MPA
Megan Lyon, MPH
Deborah Maiese, MPA
Maximilian Muenke, MD

*Updated 12/2019

Impediments and Solutions to Telegenetics Practice: Meeting Report


Medical genetics is a prime example of a specialty to which many patients have insufficient access. Telemedicine has the potential to deliver health care to individuals and families in medically underserved areas to connect patients and providers across geographic distances. On November 5th and 6th, 2009, a working group, convened by the American College of Medical Genetics & Genomics (ACMG) and the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives (NCC), met to discuss the challenges facing wider adoption of telemedicine for the provision of clinical genetics services. Broadly called telegenetics, this evolving mode of medical service delivery can be used for the assessment, diagnosis, management, treatment, education, and counseling of patients and families dealing with a wide array of genetics issues. This paper summarizes the working group meeting and the resulting recommendations including adoption of multistate licensing, national credentialing, appropriate financing and reimbursement, and continued investment in technological development to increase usability and national infrastructure.


Nirav N. Shah, MD, JD1, Lynn D. Fleisher, PhD, JD1, Hans H. Andersson, MD2, Becky B. Butler, MSSW, LCSW3, Barry H. Thompson, MD4, Judith Benkendorf , MS, CGC4, Alisha Keehn, MPA4, David Flannery MD5, Dale C. Alverson, MD6, Sylvia Au MS,CGC7, Lisa Robin8, James Puente8, Joey Ridenour, RN, MN9, and Michael S. Watson, MS, PhD4
1Sidley Austin, LLP, Chicago, Illinois; 2Tulane University School of Medicine, New Orleans, Louisiana; 3University of Arkansas for Medical Sciences, Little Rock, Arkansas; 4American College of Medical Genetics, Bethesda, Maryland; 5Medical College of Georgia, Augusta, Georgia; 6University of New Mexico School of Medicine, Albuquerque, New Mexico; 7Hawai’i Department of Health, Honolulu, Hawai’i; 8Federation of State Medical Boards, Washington, DC; 9 Nurse Licensure Compact Administrators, Chicago, IL

Telemedicine Resources

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