Genetics Policy and Law

Ohio Genetics Related Policies, Laws and Recommendations

Topic: Programs of education, detection, and treatment of genetic diseases

Programs of education, detection, and treatment of genetic diseases

State Statute Citation: ORC 3701.502

Summary: Requires the Ohio Department of Health to develop programs of education, detection, and treatment of genetic diseases and provide for habilitation, rehabilitation, and counseling of persons possessing a genetic trait of, or afflicted with, genetic disease.

Topic: Newborns screened for genetic, endocrine, and metabolic disorders

Newborns screened for genetic, endocrine, and metabolic disorders

State Statute Citation: ORC 3701.501

Summary: Requires that all newborn children shall be screened for the presence of the genetic, endocrine, and metabolic disorders specified in rules, adopted pursuant to this section. Also mandates funding to help defray the cost of metabolic formula used to treat children diagnosed with specific newborn screening disorders.

Topic: Sickle Cell Disease

Sickle Cell Disease

State Statute Citation: ORC 3701.131

Summary: Requires the Ohio Department of Health to develop programs of education and research pertaining to the causes, detection, and treatment of sickle cell disease and provide for rehabilitation and counseling of persons possessing the trait of or afflicted with this disease.

Topic: Statewide Birth Defects Information System

Statewide Birth Defects Information System

State Statute Citation: 3705.30

Summary: Authorizes the Director of Health to require hospitals, physicians and freestanding birthing centers to report children from birth to five years of age with birth defects to the Ohio Department of Health (ODH). In Fall, 2007, all hospitals in the state began reporting.

Ohio Department of Health Statement on Direct to Consumer Marketing of Genetic Tests

Benefits and concerns associated with direct to consumer genetic testing are summarized and strategies to promote the appropriate use of genetic testing in Ohio are presented.

Ohio Comprehensive Cancer Control Plan 2021-2030

The 2021–2030 Ohio Comprehensive Cancer Control Plan is a strategic plan for Ohio aimed at reducing the cancer burden in the state. The Cancer Genetics objective and strategies are outlined on page 14.

National Genetics Related Policies, Laws, Recommendations and Advisory Bodies

Advisory Committee on Heritable Disorders in Newborns and Children - The committee advises the Secretary, U.S. Department of Health and Human Services on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards. The purpose of newborn screening is to effectively reduce morbidity and mortality in newborns and children who have, or at risk for, heritable disorders.

Genetic Information Nondiscrimination Act of 2008 - The Genetic Information Nondiscrimination Act, also referred to as GINA, is a federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The law prevents discrimination from health insurers and employers from using genetic information to determine eligibility, set premiums, or hire and fire people. The President signed the act into federal law on May 21, 2008.

Genetics and Public Policy Center - The Center helps policy leaders, media and the public better understand and respond to the challenges and opportunities arising from advances in genetics technologies and their application to human health and well-being.

National Conference of State Legislatures, Genetic Technologies Project - The NCSL is a bipartisan organization that serves the legislators and staffs of the nation's 50 states, its commonwealths and territories. NCSL provides research, technical assistance and opportunities for policymakers to exchange ideas on the most pressing state issues. This includes providing information on genetics related policy briefs and reports, laws and legislative activity, publications on genetics related technologies, etc.

United States Department of Health and Human Services, Office for Civil Rights - This Office provides information on medical privacy and national standards to protect the privacy of personal health information. They also produce consumer fact sheets and educational materials on the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.

The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) Human Genome Project – ethical, legal, and social issues (ELSI) program - The DOE and NIH have devoted 3% to 5% of their annual Human Genome Project (HGP) budgets toward studying the ethical, legal, and social issues (ELSI) surrounding availability of genetic information. This represents the world's largest bioethics program, which has become a model for ELSI programs around the world. These programs have resulted in a body of work that promotes education and helps guide the conduct of genetic research and the development of related medical and public policies.