Genome Statute and Legislation Database

This bill modifies a provision related to personal information in the event of a security breach of computerized data. The definition of personal information is amended to include a deoxyribonucleic acid profile. Died.

A participating healthcare provider or participating care coordinators may not refuse to provide health care services to a member of the Health Iowa Program on the basis of various characteristics, including genetic information. The board for the Health Iowa Program must adopt rules to promote nondiscrimination with respect to members and health care providers on the basis of various factors, including genetic information. Carries over to 2022 session.

This bill prohibits health insurers from discriminating based on genetic information or tests. Authorization is required to obtain genetic information or samples. Consent requirements are established to collect, retain, transmit or use genetic information. Exceptions under consent requirements include medical or scientific research and eduction and for use in medical repositories and registries if it does not contain personally identifiable information. Health insurers may not release genetic information without prior written authorization. Exceptions for release requirements include (1) if an individual is participating in research settings, including those governed by the federal policy for the protection of human subjects, and (2) tests conducted purely for research. Measure failed.

A health carrier to notify a covered person of the right to request an external review and include appropriate statements and information in the written notice of a final adverse decision. Health carriers also must include with the notice an authorization form or other document developed by the state that complies with the federal Genetic Information Nondiscrimination Act.

Requires the Center for Congenital and Inherited Disorders to adopt rules to prohibit the retention and ensure proper disposal of residual newborn screening specimens. The Center must incinerate any residual specimens being stored before the effective date of the bill. Died.

Establishes the Healthy Iowa program. Residents of the state are entitled to enroll. Discrimination is prohibited with respect to members and providers based on genetic information. Died.

Prohibits school districts from collecting biometric data from a student, including a DNA sequence, unless the student, if an adult, or the parent or legal guardian of the student, if a minor, consents in writing.

The state board, the department of education, a unified school district or local education agency may not provide any personally identifiable information of any student or teacher, including a DNA sequence, to any federal agency, any Kansas state or local agency, state or local agency outside the state of Kansas, or any other organization or entity unless under specified circumstances. Died.

As described in the supplemental bill note, this bill establishes additional restrictions on insurance companies that require larger premiums for coverage based on obtaining a genetic test or the results of a genetic test, or that adjust premiums based on obtaining a genetic test or the results of a genetic test. The bill also specifies that the genetic testing provisions in law would apply to group policies and certificates of coverage or individual policies that provide hospital, medical or surgical expense benefits. Approved by the Governor April 15, 2010.

The statutes restrict the use of genetic tests, information about whether an individual or family member has obtained a genetic test, and test results by a health insurance company, health maintenance organization, nonprofit medical and hospital, dental, optometric or pharmacy corporation, or a group subject to K.S.A. 12-2616 et seq. offering group policies and certificates of coverage or individual policies providing hospital, medical or surgical expense benefits. These entities may not require any individual, as a condition of enrollment or continued enrollment, higher premiums or contributions or than a similarly situated individual based on a genetic test or adjust premium or contribution amounts based on a genetic test. An accident or sickness insurer may not deny coverage based on a health status-related factors, including genetic information, and group policies providing hospital, medical or surgical expense benefits may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis. The use of such information by an insurer writing life insurance, disability income insurance or long-term care insurance coverage also is restricted unless it is for the purpose of writing life insurance coverage. Life, disability income or long-term care insurers also may not provide for rates or any other aspect of coverage that is not reasonably related to the risk involved.

As described in the supplemental bill note, this bill establishes additional restrictions on insurance companies that require larger premiums for coverage based on obtaining a genetic test or the results of a genetic test, or that adjust premiums based on obtaining a genetic test or the results of a genetic test. The bill also specifies that the genetic testing provisions in law would apply to group policies and certificates of coverage or individual policies that provide hospital, medical or surgical expense benefits. Approved March 22, 2010.

An employer may not (1) seek to obtain, obtain or use genetic screening or testing information of an employee or a prospective employee to discriminate against an employee or a prospective employee or (2) subject any employee or prospective employee to any genetic screening or test.

Prohibits school districts from collecting biometric data from a student, including a DNA sequence, unless the student, if an adult, or the parent or legal guardian of the student, if a minor, consents in writing. Approved by Governor on Wednesday, May 14, 2014.

Enacting the Kansas uniform parentage act (2017).

Expanding newborn screening services and increasing transfer from the medical assistance fee fund to the Kansas newborn screening fund.

Creates a parent's right to consent in writing before any record of the minor child�s blood or deoxyribonucleic acid is created, stored, or shared, unless authorized pursuant to a court order or an ongoing criminal investigation. Died.

Requires a health facility that provides perinatal care inform each patient, upon admission regarding the patient's right to to be free of discrimination on the basis of various factors, including genetic information. Died.

Amends language pertaining to pre-existing condition exclusions in group health insurance. Prohibits group health benefit plan coverage from adjusting premium or contribution amounts for a group covered under the plan on the basis of genetic information. Died.

Permits a patient to request and receive results of his or her genetic or genetic-related tests. Requires results of genetic or genetic-related tests to be reported and transmitted to a patient who requested the test. Permits a medical laboratory to collect a specimen from a patient for a genetic or genetic-related test requested by the patient. Died.

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

This bill prohibits the adjustment of premium or contribution amounts based on genetic information; prohibits an insurer from requesting or requiring a genetic test of a member unless made pursuant to the Common Rule, equivalent federal regulations or any applicable administrative regulation for the protection of human subjects in research; prohibits the use of genetic information for underwriting purposes; prohibits the request, requirement, or purchase of genetic information by an insurer prior to an individual's enrollment under a plan; precludes insurers from requiring genetic information for eligibility for health insurance in the individual market; and prohibits the use of genetic information for the purpose of imposing any pre-existing condition exclusion. Measure failed.

Establishes health-status eligibility rules for health benefit plans in any market. Prohibits requiring a greater premium or contribution, or different benefits coverage, on the basis of any health status-related factor, including genetic information. Prohibits pre-existing condition exclusions. Prohibits adjustment of premium or contribution amounts for group health plans on the basis of genetic information. Died.

Establishes mandated coverage requirements of genetic testing for mutations of the BRCA1 or BRCA2 genes for insured who are at risk of breast cancer or ovarian cancer or who have been diagnosed with breast or ovarian cancer under the age of forty. Died.

Requires a health facility that provides perinatal care to provide each patient, upon admission or as soon thereafter as reasonably practical, written information regarding the patient's rights, including the right to be free from discrimination on the basis of genetic information. Died.

Individual or group health benefit plan or insurers may not (1) deny, cancel, or refuse to renew the benefits or coverage, or vary the premiums, terms, or conditions for the benefits or coverage, for any participant or beneficiary based on a genetic test for which symptoms have not manifested or a request or receipt of genetic services or (2) disclose any genetic test without prior authorization for each disclosure. A group or individual health benefit plan or insurer or a disability income insurer may not request or require the disclosure of any genetic test about a participant or beneficiary without prior written authorization for each disclosure.