Genetics

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.

NCSL Resources

• Genetics: A Snapshot for State Legislatures

• Stem Cells: A Guide for Policymakers

• Issue Brief Series: Ensuring Access to Genetic Services, Strengthening the Genetics Workforce and Direct-to-Consumer Genetic Testing, 2008

• State Legislatures magazine article: Information Overload?, September 2008

• State Legislatures magazine article: Screening Newborns: Just the Beginning, April 2008

• State Legislatures article: Plunging Into the Gene Pool, March 2007

• LegisBrief: Predictive Genetic Testing of Minors, April/May 2006

• DNA in Criminal Justice webpage

Additional Resources

• Privacy and Progress in Whole Genome Sequencing 
  Presidential Commission for the Study of Bioethical Issues, October 2012

• Recovery Act Funds Expand Studies of Stem Cell Biology
  National Insitutes of Health News, October 28, 2009

• 2009 National Institutes of Health Guidelines on Human Stem Cell Research

• American College of Medical Genetics (ACMG)

• Public Health Genomics
  Centers for Disease Control and Prevention

• Genetic Alliance

•  Genetics and Public Policy Center (GPPC)

• National Human Genome Research Institute (NHGRI)

• National Society of Genetic Counselors (NSGC)

• National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups

• Stem Cell Information, National Institutes of Health

• Newborn Screening ACT Sheets
  ACT sheets explain the interrelationships between the conditions screened for in state newborn screening laboratories and the markers used for screening. For each marker, there is 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 and an overview of the basic steps involved in determining the final diagnosis in the infant.