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U.S. National Institutes of Health
Last Updated: 03/05/10

Appendix A

Summary of State Laws

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.


Confidentiality of Health Information

  • Health care providers may not disclose confidential health information without the patient’s signed and dated consent, unless specifically authorized by law. The consent is valid for one year, unless the patient specifically authorizes a consent that does not expire. [Minnesota Statutes Annotated 144.335].
  • Health records generated prior to January 1, 1997, may be released if the patient hasn’t objected. However, in order to release records generated after January 1, 1997, the provider must first advise the patient in writing that his records may be released. If the patient objects, the records may not be released. Authorization for release may also be established by a patient’s nonresponse to a mailed notice that his records may be released if he does not object. The statute describes the patient health record as follows: “including but not limited to laboratory reports, x-rays, prescriptions, and other technical information used in assessing the patient’s health condition.” [Minnesota Statutes Annotated 144.335].

Conditions Imposed on Genetic Testing/Use of Genetic information

Minnesota’s Genetic Discrimination Act prohibits health plans from inquiring whether an individual has undergone a genetic test or from requiring, requesting, or inquiring if an individual has a genetic testing history. An individual who has undergone a genetic test has “the right to confidential treatment of the results.” [Minnesota Statutes Annotated, Section: 72A.139 72A.139]

Employers may condition employment on genetic information and may not administer genetic test. [Minnesota Statutes Annotated 181.974]

Permitted Releases of Health Information or Genetic Information for Research

Health records may be released to an external researcher solely for purposes of medical or scientific research only as follows:

(1) health records generated before January 1, 1997, may be released if the patient has not objected or does not elect to object after that date;

(2) for health records generated on or after January 1, 1997, the provider must: (i) disclose in writing to patients currently being treated by the provider that health records, regardless of when generated, may be released and that the patient may object, in which case the records will not be released; and (ii) use reasonable efforts to obtain the patient’s written general authorization that describes the release of records in item (i), which does not expire but may be revoked or limited in writing at any time by the patient or the patient’s authorized representative;

(3) authorization may be established if an authorization is mailed at least two times to the patient’s last known address with a postage prepaid return envelope and a conspicuous notice that the patient’s medical records may be released if the patient does not object, and at least 60 days have expired since the second notice was sent; and the provider must advise the patient of the rights specified in clause (4); and

(4) the provider must, at the request of the patient, provide information on how the patient may contact an external researcher to whom the health record was released and the date it was released. In making a release for research purposes the provider shall make a reasonable effort to determine that: (i) the use or disclosure does not violate any limitations under which the record was collected; (ii) the use or disclosure in individually identifiable form is necessary to accomplish the research or statistical purpose for which the use or disclosure is to be made; (iii) the recipient has established and maintains adequate safeguards to protect the records from unauthorized disclosure, including a procedure for removal or destruction of information that identifies the patient; and (iv) further use or release of the records in individually identifiable form to a person other than the patient without the patient’s consent is prohibited.

[Minnesota Statutes Annotated 144.335]

Definition of Genetic Test/Genetic Information

Genetic test means the analysis of human DNA, RNA, chromosomes, proteins, or certain metals in order to detect disease –related genotypes or mutations. Tests for metabolites fall within the definition of a test when an excess or deficiency of the metabolites indicates the presence of a mutation. Administration of metabolic tests by an employer or employment agency that are not intended to reveal the presence of a mutation not violate this section, regardless of the results of the tests. Test results revealing a mutation are, however, subject to this section.

[Minnesota Statutes Annotated 181.974 “Genetic Testing in Employment”]

A “genetic test” means a presymptomatic test of a person’s genes, gene products, or chromosomes for the purpose of determining the presence or absence of a gene or genes that exhibit abnormalities, defects, or deficiencies, including carrier status, that are known to be the cause of a disease or disorder, or are determined to be associated with a statistically increased risk of development of a disease or disorder. “Genetic test” does not include a cholesterol test or other test not conducted for the purpose of determining the presence or absence of a person’s gene or genes.”

[Minnesota Statutes Annotated 72A.139 “Genetic Discrimination Act”]