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Genetics Policy and Law

Many state and national laws and policies are in place related to genetic information and technologies. These laws provide protections to Ohio citizens by regulating how genetic information can be collected and how genetics technologies should be appropriately utilized.  This page provides links to state laws policies and recommendations as well as national organizations and agencies involved in setting or analyzing policy related to genetic information.

Ohio Genetics Related Policies, Laws and Recommendations
This section provides information on statutes in Ohio Revised Code associated with genetics related programs and public policy at the state level. Standards, strategic planning documents and various state policies are also highlighted


National Genetics Related Policies, Laws, Recommendations and Advisory Bodies
There is a broad range of human health and societal issues raised by the development and use, and potential misuse of genetic technologies.  To address these issues at the national level, intense research and debate have taken place and recommendations from experts and consumers have been formulated over the past two decades.  These have had a direct impact on the growth of genetics related programming, legislation and policies around our country.  This section provides information and links to key legislation and to many of the National Offices and Advisory Boards that have been at the center of these advances.


 

Ohio Genetics Related Policies, Laws and Recommendations
 

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.

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.

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.

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.

State Statute Citation: ORC §§1751.64 and 1751.65

Summary:  A health insuring corporation may not (1) cancel or fail to renew the coverage because of any health status-related factor, including genetic information, (2) require an individual seeking coverage to submit to genetic screening or testing or taken into account or inquire about such testing, (3) make a decision adverse to the applicant based on entries in medical records or other reports of genetic screening or testing, or (4) cancel or refuse to issue or renew coverage for health care services based on the results of genetic screening or testing, or (6) limit benefits of an individual or group policy, contract, or agreement based on the results of genetic screening or testing. A violation of these provisions is an unfair and deceptive act or practice in the business of insurance. Further provisions apply upon the repeal of the current protections, which are in effect until February 9, 2014.

A document containing standards and criteria developed to assist the director of health in designating  Ohio’s Regional Comprehensive Genetic Centers.   

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.

This is a strategic plan to reduce the cancer burden in Ohio. It is designed to provide guidance to individuals and organizations spanning a wide range of health and social disciplines that can play a role in controlling cancer. Goal #9 is dedicated to promoting the use of cancer genetic services in Ohio.  Cancer genetics related education, policy and surveillance goals and objectives are outlined.

 


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 2003 - 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.


Secretary's Advisory Committee on Genetics, Health and Society - (SACGHS) expired on February 28, 2011. In its nearly 10 years of operation, SACGHS addressed the broad range of human health and societal issues raised by the development and use, and potential misuse of genetic technologies. The Committee issued comprehensive reports and provided advice and recommendations to the Secretary of Health and Human Services, which will provide the government with a solid foundation for addressing new developments in the ongoing integration of genetics into clinical practice and public health.  All SACGHS documents, meeting materials and webcasts have been archived and will continue to be available on this website.


U.S. 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.

Other Useful Genetics Related Links:

National Human Genome Research Institute - Addresses policy, legal and ethical issues in Genetics Research

Partnership for Prevention - A nonpartisan organization of business, nonprofit and government leaders working to make evidence based disease prevention and health promotion a national priority.  Published: Harnessing Genetics to Prevent disease and Improve Health: A State Policy Guide

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Last Updated: 9/10/14