Next generation genetic counseling: introduction to the special issue.

Abstract

The genesis of the idea for thisspecial issue,as well as its title, “Next Generation Genetic Counseling,” originated in January 2012. As the newly hired project manager for the University of North Carolina-Chapel Hill’s Clinical Sequencing Exploratory Research (CSER) consortium project, NCGENES, Myra had begun speculating just how the adaptation of Next Generation Sequencing (NGS) would affect genetic counseling practice (Roche 2012). Later that spring, at the American College of Medical Genetics meeting, the message that NGS would have an unprecedented impact on genetic counseling was delivered loudly and clearly but it seemed that too few of the voices sending that message belonged to genetic counselors. The idea behind this Special Issue is simply this: tap into the collective wisdom of the genetic counseling community to explore how NGS’s clinical application would impact current genetic counseling practices and ponder future implications by providing a platform on which the voices of genetic counselors could be heard. Since it was still early in the adaptation phase,wesuspectedthatfew empiricalstudiesanalyzingNGS and genetic counseling would be completed in time for our submission deadline. Therefore, we decided to cast a wide net in order to capture a broader swath of the early adaptation experiences of genetic counselors as they transitioned from traditional approaches in testing, counseling, and training to what promised to be an exciting, if uncertain, future. We challenged our colleagues to think, discuss, and write about what they saw as the critical emerging issues facing our profession. We wanted to “crowd source” their ideas and hear about strategiestocombine the essence ofwhatour profession has always contributed with new, best practices for the future as we moved together towards Next Generation Genetic Counseling (NGGC). Our call for papers invited submissions describing the evolution of genetic counseling and education strategies relevant to whole genome or whole exome sequencing; counseling and ELSI issues specifically related to return of diagnostic and incidental results; and the role of the genetic counselor on multidisciplinary teams offering this testing. The diverse submissions in this issue successfully answered our call. They range from empirical studies analyzing such bread and butter topics as informed consent and return of results to case studies describing how practicing genetic counselors are grappling with these same issues in their clinics. Throughout, we have kept the focus on the genetic counselors themselves as they adapt to expanded niches and actively create new ones.