Legislation

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Advances in scientific research have provided new technologies that have enabled humans to live more healthy lives. These advances bring with them concerns about misuse especially in the field of genetics. As we discover more and more about our genetic code we must find ways to prevent unethical use of the information we learn. Legislators have articulated these concerns in bills and laws at both the State and Federal levels that direct the proper usage of information discovered from genetic testing.  

State Level

HIPAA Web Site The administrative simplification provisions of the HIPAA are intended to reduce the number of forms and methods of completing claims and other payment - related documents, and to use a universal identifier for providers of health care. Another goal is to increase the use and efficiency of computer-to-computer methods of exchanging standard health care information.

Texas Administrative Code - Genetic Services

Senate Bill 11 Medical Records Privacy Act, 77th Legislature

Senate Bill 602 amending Interagency Council (IAC) for genetic services, 76th Legislature

The State of Texas enacted House Bill Number 39, in September 1997, relating to the prohibition of discrimination regarding insurance coverage and employment based on the use of genetic testing. This Act added clauses to amend the following Texas statutes. To view these amendments, click on the appropriate Texas code below. 

Addition to the Insurance Code
Addition to the Labor Code
Addition to the Health and Safety Code
(This gives general provisions regarding birth defects.)
Addition to the Occupation and Business Regulations--Vernon's Statutes

You may access other bills that are being reviewed by the Texas legislature at Texas Legislature Online. For genetics related bills, type "genetic" as a keyword.  

Federal Level

HIPAA The Health Insurance Portability and Accountability Act of 1996

With renovations in the American health care delivery system, politicians are working to develop a "patient's bill of rights." In doing so, they have initiated legislature to safeguard privacy with regard to genetic testing at the federal level. Most recently, the first session of the 106th Congress introduced the "Genetic Nondiscrimination in Health Insurance and Employment Act of 1999." This bill, initiated on July 1, 1999, attempts to eliminate the use of genetic testing results as a means for exclusion from health insurance or employment.

For more information on bills and laws regarding genetics privacy and nondiscrimination, visit the Federal Policy and Legislation page of the National Human Genome Research Institute at NIH.

The Genetics and the Law Project, an initiative of the Council for Responsible Genetics, released an expansive searchable online clearinghouse of information on emerging legal developments in human genetics. The project offered six original, in-depth reports and a unique database of court cases and legislation in genetics. This resource provides critical guidance to patients, lawyers, and healthcare stakeholders in making sense of rapid changes in science and the law.

 

Please Note: External links to other sites are intended to be informational and do not have the endorsement of the Texas Department of State Health Services. These sites may also not be accessible to persons with disabilities.

 

Last updated April 19, 2013