This summary of state laws does not include full citations for statutes that prohibit discrimination in employment or insurance on the basis of genetic testing or genetic information. There are other comprehensive collections of state laws addressing genetic nondiscrimination in employment and insurance. Therefore, there are complete references only where the statute is relevant for the conduct of research using tissue specimens.
Restrictions on the use of genetic information for provision of insurance or employment purposes.
Health care providers may transfer individual identifiable medical record information for the purposes of clinical research, utilization review, quality review, performance improvement, billing for services or other functions performed by health care providers or their agents in support of direct patient care, provided (A) in the case of clinical research, no individually identifiable medical record information may be disclosed by the clinical researcher, unless the disclosure would otherwise be permitted, and (B) the entity to whom the information is transferred agrees not to disclose the information unless the disclosure would otherwise be permitted if made by the transferor. [Connecticut General Statutes Section 38a-988a.]
Authors’ note: Connecticut passed a highly detailed statute pertaining to veterans’ health information and access to clinical health care information that specifies the process for requesting, providing, examining, and retaining tissue slides and pathology blocks. Title 19a “Public Health and Well-being” mandates that patients or their designated health provider have the right to examine slides with their retained tissue, and specifies procedures for requesting, safeguarding, cutting, and returning tissue slides.
Furnishing of health records and veterans’ information. Access to tissue slides or blocks.
(a) Upon the written request of a patient or the patient’s attorney or authorized representative, or pursuant to a written authorization, an institution licensed pursuant to this chapter shall furnish to the person making such request a copy of the patient’s health record including but not limited to, copies of bills, laboratory reports, prescriptions and other technical information used in assessing the patient’s health condition. In addition, an institution shall provide the patient or the patient’s designated health care provider with a reasonable opportunity to examine retained tissue slides and retained pathology tissue blocks. Upon the written request of the patient, the patient’s attorney or the patient’s designated health care provider, an institution shall send the original retained tissue slide or original retained tissue block directly to the patient’s designated licensed institution, laboratory or physician. If the original slide or block is not available or if a new section cut of the original slide or block is a fair representation of the original slide or block, then the institution may send the new section cut, which is clearly labeled as a new section cut, to the patient’s designated health care provider. Any patient or the patient’s attorney or authorized representative who is provided with an original retained slide, tissue block or a new section under the provisions of this subsection shall be solely responsible for safeguarding and returning the slide, block or new section to the institution. Any institution or laboratory that has released an original slide, an original tissue block or new section pursuant to the provisions of this subsection shall not be subject to any liability arising out of releasing or not retaining the slide, block or new section and no cause of action for damages shall arise against any such institution for releasing or not retaining the slide, block or new section. No such institution shall charge more than sixty-five cents per page, including any research fees, clerical fees, handling fees or related costs, and the cost of first class postage, if applicable, for furnishing or providing access to a health record pursuant to this subsection, except such an institution may charge the amount necessary to cover its cost of materials for furnishing a copy of an x-ray or for furnishing an original retained slide, an original tissue block or a new section cut from a retained pathology tissue block. For purposes of this subsection, “health care provider” means an institution or laboratory licensed under this chapter or licensed in the state where located or a physician licensed under chapter 370 or licensed in the state where located. [Connecticut General Statutes Section 19a-490b]