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Explore our curated collection of resources including top publication outlets for ELSI scholars, Centers of Excellence in ELSI Research, ELSI databases and research centers, genome research consortia, statutes and legislation related to genomics, and bioethics resources.

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  • Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. 1/8/2020 Referred to Finance. Bill Status: Pending

    • state bill
    • bill
    • bill status pending
    • New York
    • employment nondiscrimination

  • Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. 1/8/2020 Referred to Investigations and Government Operations. Bill Status: Pending

    • state bill
    • bill
    • bill status pending
    • New York
    • employment nondiscrimination

  • Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees. Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work. Protected class includes predisposing genetic characteristic. 4/3/2020 Signed by the Governor. Bill Status: Enacted

    • state bill
    • bill
    • bill status enacted
    • New York
    • employment nondiscrimination

  • Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's. 4/3/2020 Signed by the Governor. Bill Status: Enacted

    • state bill
    • bill
    • bill status enacted
    • New York

  • The law safeguards the rights and welfare of individual human subjects in the conduct of human research projects and provides protections against the possible conduct of medical or psychological research without voluntary informed consent.

    • state statute
    • New York

  • Prior informed consent is required to perform a genetic test. Further disclosures require additional consent. For medical research purposes and with approval from an institutional review board and consent, a biological sample may be retained for longer than 60 days and be used for scientific research. Samples may be used for research conducted in accordance with applicable law and regulation and pursuant to a research protocol approved by an institutional review board, if individuals who provided the samples have given prior informed consent for the use of the sample for general research purposes without restrictions, and the samples have been permanently stripped of identifying information or coded to protect the individuals identity. Upon request samples that have not already been used for research must be destroyed. Family members of a research participant may not be contacted without the consent of the individual. Additional provisions address confidentiality, the incorporation of information into medical records, disclosure and penalties for violations.

    • state statute
    • New York
    • genetic privacy

  • Unless it can be clearly shown that a person's unique genetic disorder, defined to include the sickle cell trait, carriers of Tay-Sachs, and carriers of Cooleys anemia only, would prevent a person from performing the particular job, no person who is otherwise qualified may be denied equal opportunities to obtain or maintain employment or to advance in position in his job solely because a person has a unique genetic disorder.

    • state statute
    • New York
    • employment nondiscrimination

  • Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees. Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work.

    • state statute
    • New York
    • employment nondiscrimination

  • An employer or labor organization may not discriminate against employees, applicants or members based on a predisposing genetic characteristic. An employer or employment agency may not print or circulate materials or use a form of application that discriminate based on a predisposing genetic characteristic. Additional provisions apply to employers, labor organizations, employment agencies, and licensing agencies. A genetic test may be required as a condition of employment if directly related to possible increased risk of disease in the work environment or, with informed consent, for workers compensation and to determine susceptibility to toxins found in the workplace environment.

    • state statute
    • New York
    • employment nondiscrimination

  • No insurer may request or require an individual proposed for insurance coverage to submit to a genetic test without prior written informed consent. Further disclosures require additional consent. If an adverse underwriting decision is based on the results of a genetic test, the insurer must notify the individual. No insurer who lawfully possesses information derived from a genetic test on a biological sample may incorporate the information into the record of a non-consenting individual. Penalties for violations are set forth.

    • state statute
    • New York
    • health insurance nondiscrimination