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Genome Statute and Legislation Database

The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

The Genome Statute and Legislation Database is reviewed and updated monthly. Searchable topics in the database include employment and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening specimens and other topics of interest.

Definitions of terms such as "bill", "statute", and "regulation" are available through the Glossary of Statutory, Legislative, and Regulatory Terms.

For other helpful links and legislative databases, please see Additional Resources.

Search

State Primary Link Topic(s) Bill Status Summary
New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill creates the genetics advisory council. The council, if created, will study and make recommendations on various issues, including unfair discrimination by insurers and employers. Measure failed.

New York Health Insurance Nondiscrimination Died

This bill prohibits group or blanket policies that cover 51 or more employees for hospital, medical, major medical, or similar type comprehensive coverage from excluding members or dependents or establishing rates based on predisposing genetic characteristics. The bill also prohibits health insurers from requiring or using tests for or information about predisposing genetic characteristics for underwriting. The same restrictions are imposed upon hospital service corporations, health services corporation and medical expense indemnity corporations covering 51 or more employees. Measure failed.

New York Health Insurance Nondiscrimination Died

his bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. Measure failed.

New York Use of Residual Newborn Screening Specimens Died

This bill prohibits the retention of DNA, blood spots or other genetic information with an infant's identifying information for any period of time or for any purpose other than newborn screening without parental consent. Measure failed.

New York Health Insurance Coverage Died

This bill requires accident and health insurance policies to cover the cost of genetic testing of people with a family history of cancer when his or her physician determines that there is a significant risk of developing cancer. Measure failed.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits discrimination based on genetic characteristics in life and disability insurance. Measure failed.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Measure failed.

New York Health Insurance Nondiscrimination Died

This bill defines the term "genetic predisposition" for purposes of individual and small group health insurance policies, requires that genetic predisposition be disregarded in community rating, and provides that no pre-existing condition exclusion in such a policy shall exclude coverage on the basis of any genetic predisposition. Measure failed.

New York Health Insurance Nondiscrimination Died

This bill prohibits any group or blanket health insurance policy from excluding coverage for any group member based on a predisposing genetic characteristic, and prohibits any hospital service corporation, health service corporation or medical expense indemnity corporation contract from excluding coverage for any group member based on predisposing genetic characteristics. Measure failed.

New York Health Insurance Nondiscrimination Died

his bill defines the term "genetic predisposition" for purposes of individual and small group health insurance policies, requires that genetic predisposition be disregarded in community rating, and provides that no pre-existing condition exclusion in such a policy shall exclude coverage on the basis of any genetic predisposition. Measure failed.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill establishes a genetics advisory council to study various topics, including the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. The bill addresses exclusion or inclusion of subjects to participate in human research based on race, ethnicity or sex; requires reporting certain information relating to the collection of data, and provides that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Died.

New York Health Insurance Coverage Died

Requires policies of hospital, surgical or medical care to provide coverage for ovarian cancer screening. These policies also must provide coverage for specific services if a person is believed to be at increased risk of ovarian cancer to due to family history, personal history or positive genetic testing. Died.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers if recommended by a board-certified geneticist or board-certified genetic counselor. Died.

New York Health Insurance Coverage Died

Every policy that provides medical coverage, including coverage for physician services in a physician's office, and every policy that provides major medical or similar comprehensive coverage must cover the cost of genetic testing and any subsequent treatment resulting from the results of the genetic test for people who are, in the opinion of a physician, at significant risk of contracting cancer. Died.

New York Use of Residual Newborn Screening Specimens Died

This bill requires written parental consent to store a newborn's test, blood spot or other genetic information for any purpose other than newborn screening. Died.

New York Privacy Died

This bill establishes the Medicaid identification and anti-fraud biometric technology pilot program. Biometric technologies includes, but is not limited to, DNA and other identifiers. Died.

New York Privacy Died

Establishes the office of data protection and privacy for intelligence data centers to protect the privacy of personal information and biometric identifiers, including DNA. Died.

New York Privacy Died

This bill establishes the Medicaid identification and anti-fraud biometric technology pilot program. Biometric technologies includes, but is not limited to, DNA and other identifiers. Died.

New York Privacy Died

Prohibits the release of personally identifiable student information, including DNA sequence, where parental consent is not provided. Died.

New York Health Insurance Coverage Died

Requires policies that provide coverage for hospital, medical or surgical care to provide coverage for screening for ovarian cancer, upon examination by a physician or other factors, including genetic testing, for an ultrasound at specified periods. Died.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers, if recommended by a board-certified geneticist or board-certified genetic counselor. Died.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination, Privacy Died

Establishes a genetics advisory council and requires the council to report to the Governor on several topics, including (1) creating an environment in which there is equitable access to the benefits of genetic tests to all citizens regardless of race, ethnicity or economic status; and (2) the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

New York Health Insurance Coverage Died

This bill requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers. Died.

New York Health Insurance Coverage Died

The bill requires every policy of hospital, surgical or medical care or policies that provide reimbursement for laboratory tests or diagnostic X-rays must provide coverage for testing of familial dysautonomia, Canavan's disease and Tay-Sachs. Died.

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Additional Resources

Cornell Legal Information Institute
This website allows users to search for Federal and state laws and regulations. NHGRI’s Genome Statute and Legislation Database does not include regulations.

LawSeqSM Database
Developed at the University of Minnesota and Vanderbilt University Medical Center, this database allows users to search federal and state statutes, regulations, and reported judicial decisions. The database allows searches by jurisdiction (federal, state, and individuals states), source type, topic, and open text. This resource was developed by a project funded by NHGRI and the National Cancer Institute (NCI) on “LawSeqSM: Building a Sound Legal Foundation for Translating Genomics into Clinical Application” (grant #: R01HG008605; Susan M. Wolf,. Ellen Wright Clayton, and Frances Lawrenz, principal investigators). The team keeps this database up to date.

National Society of Genetic Counselors
To find information about state genetic counselor licensing laws, visit the National Society of Genetic Counselors’ website. NHGRI’s Genome Statute and Legislation Database does not include state laws related to genetic counseling. 

Last updated: February 8, 2024