NYMAC Summit 2015

I was very fortunate to attend the New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC) Summit 2015 from May 28-29 in Baltimore, MD. NYMAC is one of seven regional collaboratives within the United States that aims to improve access to genetic services for families affected by heritable disorders.

More than 30 speakers including parents, genetic counselors, geneticists, physicians and other health-care providers, policy makers, and additional stakeholders such as public health professionals and LEND faculty presented a wide range of topics that focused on overcoming barriers that prevent individuals and families from receiving genetic services.

Some of the themes that emerged from the conference included improving interdisciplinary care for patients through better communication between providers, addressing language and cultural barriers that may prevent individuals from accessing genetic services, evaluating different educational resources available for families to improve their quality of care, implementing distance strategies such as telemedicine models, and using genetic technologies on a population-based scale.

I especially enjoyed hearing about family perspectives from parents who have a child with a genetic condition. These individuals have become extraordinary advocates for children with special health care needs and their families, and have been involved in creating resources and programs to help other parents and families. When designing new policies to improve patient care, it is essential to understand parental perspectives because parents are the main healthcare provider in their child’s “medical home”.

During the breakout sessions, I attended the Primary Care and Linkages Workgroup session regarding interdisciplinary care. We discussed inclusion and diversity, and the importance of self-perception when providers consider the definition of “cultural humility”. Faculty from the University of Pittsburgh discussed the LEND program as an example of how to incorporate genetic education and the concept of family-centered care into a training program for future health-care providers.

Lastly, it was impressive to see the collaboration between numerous different stakeholders, and the different roles that genetic counselors can have within this multi-disciplinary public health team.

My participation in the NYMAC 2015 Summit was made possible by the NYMAC-Genetics Public Health Fellowship program. This program provides graduate level education to genetic counseling and LEND students, in order to create future leaders in genetics, and improve advocacy for the translation of genetic information and services in the public health realm.

For more information about the NYMAC-GPH Fellowship Program, please email Kunal Sanghavi at ksangha1@jhmi.edu

 -Amy Davis, class of 2016