Genetic Technologies Project
NCSL's Genetic Technologies Project equips state legislators, legislative staff and other policymakers with information to facilitate the drafting of sound legislation to address genetics and other areas where science, medicine, ethics and policy merge. The project provides resources on a variety of genetics public policy and related issues, including newborn screening, discrimination, privacy issues, reproductive technologies, stem cell research and health professional issues.
Genetics: A Snapshot for
State Legislatures Now Available
The role of states in genetics has evolved over four decades. Research in genetics continues to realize new products and services available to the public. Correspondingly, state legislatures and government agencies are evaluating how they might ensure that all consumers can reap the benefits of genetic technology. States first became involved in providing genetic services when programs to screen newborns for inherited disorders began in the 1960s. Newborn screening programs remain a vital component of state public health services and have expanded significantly in recent years with the advent of new screening tools.
Dramatic changes in other areas of genetics also have occurred. Today, states have a stake in access to other genetic services; education of health professionals and the public; surveillance, data and information systems; research involving diseases caused by genetic or a mix of genetic and environmental factors; and antidiscrimination measures and privacy protections for genetic information.
Frequent reports about research identifying new genetic links to many common illnesses—from cancer to schizophrenia—are a clear indication that this trend will continue. This guide is intended to help policymakers gain a basic understanding of current state roles in genetics and where the road to discovery may take them in the future.
Newborn Screening ACT Sheets Now Available to Help Health Professionals Act Appropriately When Infants Screen Positive
These ACT sheets can help health professionals improve the effectiveness of state newborn screening programs. Developed by a work group that included experts in the various specialties and conditions involved in newborn screening for endocrine, hematological, genetic and metabolic diseases and the American College of Medical Genetics, the ACT sheets explain the interrelationships between the conditions screened for in state newborn screening laboratories and the markers (analytes) used for screening. For each marker, there is:
1) an ACTion (ACT) sheet that describes the short-term actions a health professional should follow in communicating with the family and determining the appropriate steps in the follow-up of the infant that has screened positive
2) an overview of the basic steps involved in determining the final diagnosis in the infant
 NCSL and the National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups
In 2005 NCSL embarked on a project with the American College of Medical Genetics (ACMG) and the Health Resources and Services Administration (HRSA) to aid in the identification of policy issues relevant to the Genetics and Newborn Screening Regional Collaborative Groups established by HRSA. NCSL is providing technical assistance to the ACMG's National Coordinating Center (NCC) for the collaboratives regarding policy matters of mutual concern to states and the center such as interstate delivery of genetic services, state regulation of telemedicine and access to treatment and other services for disorders diagnosed through newborn screening. NCSL's involvement in the NCC also will help to inform state legislators and staff of the issues facing the regional collaboratives.
For more information about the National Coordinating Center for the Genetics and Newborn Regional Screening Collaborative Groups, please see the FACT sheet developed by ACMG.
This page is made possible by support from the Health Resources and Services Administration and the American College of Medical Genetics.
Finding a Medical Home for Children: A Discussion for Health Care Practitioners, Policymakers, and Public Health Agencies
Webcast from Wednesday, February 21, 2007
This Web conference brings together the private and public sectors to discuss their potential roles in helping all children obtain a medical home to coordinate health services and improve the quality of care. ***Click Here to access this archived webcast for FREE*** |
