For health care professionals (HCPs), patients and families alike, genetic advocacy groups
play an important role in dealing with genetic diseases and birth defects. The Genetic …

Genetic research commands great attention from the general public and advocacy groups,
perhaps unjustifiably. Many advocacy groups strive to play a role in advancing gene …

Twenty-one years ago, our pediatrician called to ask me to stop by his office to pick up some
laboratory results. My daughter Elizabeth had been born 6 weeks earlier with a severe …

Purpose: Disease advocacy organizations may assist in the conduct of research in a variety
of ways. We sought to characterize how disease advocacy organizations participate in …

The term" duty to recontact" refers to the possible ethical and/or legal obligation of genetics
service providers (GSPs) to recontact former patients about advances in research that might …

Members of the genetic counseling community have debated the need for doctoral degree
programs to further advance the profession. However, genetic counselors' interest in …

Abstract The National Society of Genetic Counselors (NSGC) was established in 1979 and
has grown from a small dedicated group of genetic counselors to over 5,000 certified genetic …

Genetic Alliance publications are aimed at emerging and experienced advocacy leaders,
researchers, healthcare providers, and policymakers working in the area of genetics. These …

The genetic counseling profession is continuing to develop globally, with countries in
various stages of development. In some, the profession has been in existence for decades …

Genetic counselors have long recognized and acknowledged the important relationship
between our profession and the disability community. We embrace unique and challenging …