Genetic Privacy Laws─50 State Survey Who Needs Consent from Patient? This list does not include statutes that exclusively restrict employers, or genetic counseling acts. Key: An x indicates that the statement, prohibition (or whatever the category is) is explicit. [] indicates that the statement is implied. State Statute Act or statute title Notes No genetic testing statute, but healthcare information statute may apply Applies to issuers of health benefit plans─can't require test Forbids Genetic test Applies to disclosure of or analysis health person's defined insurers identity x x Cannot require / request test Alabama Ala. Code § 27-53-1 et seq. Genetic testing for cancer Alaska Alaska Stat. § 18.13.010 Genetic Privacy Act x Ariz. Rev. Stat. § 12-2801 et seq. Genetic Testing Act x Ariz. Rev. Stat. § 20-448.02 Unfair Practices and Frauds x Ark. Code Ann. § 23-66-320 Genetic Nondiscrimination in Insurance Act Applies to insurers x Ark. Code Ann. § 20-35-101 et seq. Genetic Research Studies Nondisclosure Act Protects research records of subjects in genetic research studies and stored tissues x Cal. Civ. Code § 56.17 Genetic test results; unlawful disclosure; written authorization; penalties Prevents disclosure of genetic test results Cal. Health & Safety Code § 1358.24 ...Compliance with federal Genetic Information Nondiscrimination Act of 2008 Applies to issuers of Medicare; can't determine eligibility based on genetic information Cal. Ins. Code § 10123.35 ...Self-insured employee welfare benefit plans; genetic test results… Applies to self-insured welfare benefit plan Cal. Ins. Code § 10140.1 ...Unlawful disclosure; written authorization... Applies to insurers licensed to issue life or disability insurance Cal. Ins. Code § 10146 et seq. Underwriting on the basis of test of genetic characteristics Applies to insurers; can't determine eligibility based on genetic information x x x Cal. Ins. Code § 10192.24 ...Compliance with federal Genetic Information Nondiscrimination Act of 2008 Applies to issuers of Medicare; can't determine eligibility based on genetic information x x x Colo. Rev. Stat. § 10-3-1104.6 Genetic information...legislative declaration Colo. Rev. Stat. § 10-3-1104.7 Genetic testing...limitations on disclosure of information Prevents insurers from using genetic information to deny coverage Conn. Gen. Stat. § 38a-988 & -988a Insurance Information and Privacy Protection Act Applies only to insurance institutions Del. Code tit. 16, § 1220 et seq. Genetic information Del. Code tit. 18, § 2317 Genetics based discrimination D.C. Code § 2-1402.31 x Any person Healthcare provider Consent by Patient Required To: Perform / Obtain / access Retain require genetic genetic genetic information information test Defined as Personal Property, Private, Confidential, or Privileged Exceptions Disclose/release genetic information Must notify person that Specific Medical requirements DNA repositories or for consent analysis registries form? was conducted Research or Research if deeducation identified Any purpose if deidentified Diagnosis Genetic information DNA samples x [] Specific penalties for genetic privacy violations x X [] x x x x x x x x x x x x x [] x x x x x x x x Arizona Arkansas California Colorado Connecticut x (unless person consents) x x x (if deidentified) x [] x x x [] x x [] x x x [] x x x [] x [] x x x x x [] [] [] [] x x x [] x [] x [] x x x x x x x x [] x x [] x [] Prevents discrimination re: insurance issuance x x Human Rights Law Prevents discrimination based on genetic information x x x Fla. Stat. § 627.4301 Genetic information for insurance purposes Applies to insurers; prevents insurers from using genetic information x x Fla. Stat. § 760.40 Genetic testing; informed consent; confidentiality; penalties; notice of use of results Applies to DNA analysis Ga. Code Ann. § 33-54-2 et seq. Genetic testing Delaware District of Columbia x x x [] x x (if for marketing) x x x x x x x x x x x [] x x x Florida Georgia Scott Smith, Platte S. Nielson, and Beth Kennedy x (DNA analysis) [] x [] x x [] x x [] x Genetic Privacy Laws: 50 State Survey x x x x x x (results of DNA analysis) x x x (for insurers) J. Health Life Sci. L., October 2011. © 2011 University of Utah. Used with permission. All rights reserved Genetic Privacy Laws─50 State Survey Who Needs Consent from Patient? This list does not include statutes that exclusively restrict employers, or genetic counseling acts. Key: An x indicates that the statement, prohibition (or whatever the category is) is explicit. [] indicates that the statement is implied. State Hawaii Statute Haw. Rev. Stat. § 431:10A-118 Act or statute title Genetic information nondiscrimination in accident and health or sickness insurance coverage─other Hawaii statutes apply to more specific insurers (same wording) Notes Applies to "insurers"; can't use genetic information to determine coverage Forbids Genetic test Applies to disclosure of or analysis health person's defined insurers identity x (genetic information) x Cannot require / request test Any person Healthcare provider Perform / Obtain / access Retain require genetic genetic genetic information information test x Defined as Personal Property, Private, Confidential, or Privileged Exceptions Disclose/release genetic information Must notify person that Specific Medical requirements DNA repositories or for consent analysis registries form? was conducted x x x x x x Research or Research if deeducation identified Any purpose if deidentified Diagnosis Genetic information DNA samples Specific penalties for genetic privacy violations No statutes beyond those that exclusively restrict employers Idaho 410 Ill. Comp. Stat. 513/1 et seq. Genetic Information Privacy Act Applies to insurers and other parties Ind. Code § 16-18-2-168; 16-39-1-4, -5-3 Disclosure of health records Does not specifically address genetic testing Ind. Code § 27-8-26-1 et seq. Genetic screening or testing Applies only to insurers Iowa Iowa Code § 729.6 Genetic testing Kansas Kan. Stat. Ann. § 40-2259 Genetic screening or testing: prohibitions Applies only to insurers Kentucky Ky. Rev. Stat. Ann. § 304.12-085 Denial of insurance because of...genetic tests Applies to insurers; can't refuse coverage based on genetic information La. Rev. Stat. § 22:1023 Prohibited discrimination; genetic information; disclosure requirements… Applies only to insurers; prevents insurers from refusing coverage based on genetic information La. Rev. Stat. § 40:1299.6 Privacy of genetic information Applies only to the results of preor post-natal genetic tests La. Rev. Stat. § 40:1299.96 Health care information; records Does not specifically address genetic testing Illinois No genetic testing statute, but healthcare information statute may apply Consent by Patient Required To: Indiana x x x [] x [] x x x x x x x x x x [] x x (and forbids request) [] x x x [] x x x x x x x (if deidentified) x (if deidentified) x x (still need consent) x x x x [] x x x (pre- or post-natal genetic tests) Louisiana x [] [] Maine Me. Rev. Stat. Ann. Tit. 24-A, § 2159-C Discrimination based on genetic information or testing Applies to insurers; can't use genetic information in determining eligibility x x x (but request OK with specific requirements) Maryland Md. Code Ann., Ins. § 27-909 Use of genetic tests Applies to insurers; can't use genetic information in determining eligibility x x x Scott Smith, Platte S. Nielson, and Beth Kennedy x x x x [] Genetic Privacy Laws: 50 State Survey x [] [] [] [] J. Health Life Sci. L., October 2011. © 2011 University of Utah. Used with permission. All rights reserved Genetic Privacy Laws─50 State Survey Who Needs Consent from Patient? This list does not include statutes that exclusively restrict employers, or genetic counseling acts. Key: An x indicates that the statement, prohibition (or whatever the category is) is explicit. [] indicates that the statement is implied. State Statute Act or statute title Notes No genetic testing statute, but healthcare information statute may apply Forbids Genetic test Applies to disclosure of or analysis health person's defined insurers identity Mass. Gen. Laws ch. 111, § 70G Genetic information and reports protected as private information; prior written consent for genetic testing Mass. Gen. Laws ch. 175 § 108H ...Insurance policies; genetic tests; discrimination based on genetic information Applies only to insurers; can't condition eligibility on genetic information x x x Mass. Gen. Laws ch. 175 § 108I Disability or long-term care insurance policies; genetic tests; discrimination based on genetic information Applies only to insurers; can't discriminate re: results of genetic test x x x Mass. Gen. Laws ch. 175 § 120E Applies only to insurers; can't Life insurance policies; genetic tests; discrimination discriminate re: results of genetic based on genetic information test x x x Mass. Gen. Laws ch. 176A § 3B Medical service plans; genetic tests; discrimination based on genetic information Applies only to corporations; prevents using genetic information to determine coverage x [] x Mass. Gen. Laws ch. 176B § 5B Medical service plans; genetic tests; discrimination based on genetic information Applies only to corporations; prevents using genetic information to determine coverage x [] x Mass. Gen. Laws ch. 176G § 24 Health maintenance contracts; genetic tests; discrimination based on genetic information Applies only to health maintenance organization; can't discriminate re: results of genetic test x [] x Mass. Gen. Laws ch. 176I § 4A Health benefit plans; genetic tests; discrimination based on genetic information Applies to "organizations" and "preferred providers"; can't discriminate re: results of genetic test x x x Mich. Comp. Laws § 333.17020 Ordering of presymptomatic or predictive genetic tests; required consent Applies to physicians or other delegated individuals who order genetic tests x Mich. Comp. Laws § 333.17520 Ordering of presymptomatic or predictive genetic tests; required consent Applies to physicians or other delegated individuals who order genetic tests x Minn. Stat. § 13.386 Treatment of genetic information held by government entities and other persons Applies to government entities Minn. Stat. § 72A.139 Genetic Discrimination Act Applies to insurers; can't use genetic information in determining eligibility Massachusetts x x (unless consent) Cannot require / request test x Any person Healthcare provider Consent by Patient Required To: Perform / Obtain / access Retain require genetic genetic genetic information information test x x x x x x x x x Defined as Personal Property, Private, Confidential, or Privileged Exceptions Disclose/release genetic information Must notify person that Specific Medical requirements DNA repositories or for consent analysis registries form? was conducted x x x x x x x x x x x x x Research or Research if deeducation identified x (confidential x (confidential research research approved by approved by IRB) IRB) Any purpose if deidentified Diagnosis Genetic information x [] DNA samples Specific penalties for genetic privacy violations x Michigan x x x x x x Minnesota Mississippi Minn. Stat. § 144.293, -.295 Release or disclosure of health records Does not specifically address genetic testing Miss. Code Ann. § 41-119-13 Health Information Technology Act Does not specifically address genetic testing Scott Smith, Platte S. Nielson, and Beth Kennedy x [] [] [] [] Genetic Privacy Laws: 50 State Survey x (but must try to get consent and give researcher's contact information) [] [] J. Health Life Sci. L., October 2011. © 2011 University of Utah. Used with permission. All rights reserved Genetic Privacy Laws─50 State Survey Who Needs Consent from Patient? This list does not include statutes that exclusively restrict employers, or genetic counseling acts. Key: An x indicates that the statement, prohibition (or whatever the category is) is explicit. [] indicates that the statement is implied. State Missouri Statute Act or statute title Notes No genetic testing statute, but healthcare information statute may apply Forbids Genetic test Applies to disclosure of or analysis health person's defined insurers identity Cannot require / request test Any person Healthcare provider Consent by Patient Required To: Perform / Obtain / access Retain require genetic genetic genetic information information test .1303: Genetic testing─unfair trade practices Applies to insurers x x .1309: Disclosure of genetic information Applies to persons who store, receive, or furnish genetic information x [] Mont. Code Ann. § 33-18-901 to -04 Unfair trade practices Applies to insurers x x x Mont. Admin. R. 6.6.527 Prohibition against use of genetic information and requests for genetic information Applies to issuers of Medicare; does not discuss consent x x x Neb. Rev. Stat. § 71-551 Genetic tests Applies only to physicians ordering predictive genetic tests x Neb. Rev. Stat. § 44-7,100 Genetic testing; prohibited acts Forbids insurers from requiring test before issuing policies x x Nev. Rev. Stat. § 629.101 et seq. Genetic Information x No Nev. Rev. Stat. § 689A.417 Insurer prohibited from requiring or using information concerning genetic testing; exceptions Applies only to insurers x x x Nev. Rev. Stat. § 689B.069 Insurer prohibited from requiring or using information concerning genetic testing; exceptions Applies only to insurers x x x Nev. Rev. Stat. § 689C.198 Insurer prohibited from requiring or using information concerning genetic testing; exceptions Applies only to insurers x x x Nev. Rev. Stat. § 695C.207 Requiring or using information concerning genetic testing Applies only to health maintenance organizations (insurers) x x x N.H. Rev. Stat. Ann. § 141-H:1 et seq. Genetic Testing Applies to employers, insurers, and other parties x x x N.H. Code Admin. R. Ins. 3005.01 When authorization required for disclosure of nonpublic personal health information Applies to insurers N.J. Stat. Ann. § 10:5-5, 10:5-43 et seq. Genetic Privacy Act Applies to all persons x x N.J. Stat. Ann. § 17B:30-12 Discrimination prohibited; terms defined Applies to insurers x x N.M. Stat. § 24-21-1 et seq. Genetic Information Privacy Act Applies to insurers and other parties x x (in part) x [] x N.Y. Civ. Rights Law § 79-l Confidentiality of records of genetic tests x No x [] x N.Y. Ins. Law § 2615 Genetic testing written informed consent Applies only to insurers, but OK to use genetic information in underwriting x x Genetic information in health insurance Applies to insurers; can't use genetic information in determining eligibility; insurers must comply with GINA (only defines genetic information) x Mo. Rev. Stat. § 375.1300 et seq. Montana x x x Disclose/release genetic information Must notify person that Specific Medical requirements DNA repositories or for consent analysis registries form? was conducted Research or Research if deeducation identified Any purpose if deidentified Diagnosis Genetic information DNA samples x x x [] x Specific penalties for genetic privacy violations x [] [] Defined as Personal Property, Private, Confidential, or Privileged Exceptions [] [] [] [] x x x x x x x x x x x x [] Nebraska Nevada x [] x [] x x x x New Hampshire x x (scientific, medical, or public policy research) x x [] x x x x x [] x x x x New Jersey New Mexico New York North Carolina N.C. Gen. Stat. § 58-3-215 Scott Smith, Platte S. Nielson, and Beth Kennedy x x Genetic Privacy Laws: 50 State Survey x x x x x x (> 60 days) x x x x x x x x [] x x x x J. Health Life Sci. L., October 2011. © 2011 University of Utah. Used with permission. All rights reserved Genetic Privacy Laws─50 State Survey Who Needs Consent from Patient? This list does not include statutes that exclusively restrict employers, or genetic counseling acts. Key: An x indicates that the statement, prohibition (or whatever the category is) is explicit. [] indicates that the statement is implied. State North Dakota Statute Act or statute title Notes No genetic testing statute, but healthcare information statute may apply x Forbids Genetic test Applies to disclosure of or analysis health person's defined insurers identity Cannot require / request test Any person Healthcare provider Consent by Patient Required To: Perform / Obtain / access Retain require genetic genetic genetic information information test Defined as Personal Property, Private, Confidential, or Privileged Exceptions Disclose/release genetic information Must notify person that Specific Medical requirements DNA repositories or for consent analysis registries form? was conducted Research or Research if deeducation identified Any purpose if deidentified Diagnosis Genetic information DNA samples Specific penalties for genetic privacy violations N.D. Cent. Code § 23-01.3-01 Health information protection General PHI statute; defines PHI to include genetic information; applies mainly to public health authorities Ohio Rev. Code Ann. § 1751.64, .65 Restrictions on use of genetic screening or testing before and after 2-9-14 Applies to insurers; just includes prohibitions and doesn't touch on consent x x x x Ohio Rev. Code Ann. § 3901.49, .491 Applies to insurers; just includes Genetic screening or testing prohibitions before and prohibitions and doesn't touch on after 2-9-14 consent x x x x Ohio Rev. Code Ann. § 3901.50, .501 Applies to gov't insurers; just Genetic screening or testing prohibitions before and includes prohibitions and doesn't after 2-9-14 touch on consent x x x x Ohio Rev. Code Ann. § 3904.01, .13 Disclosure of personal or privileged information x x Ohio Applies to insurers' disclosure of "personal information" Okla. Stat. tit. 36, § 3614.1 to -3 Genetic Nondiscrimination in Insurance Act Applies to insurers Okla. Stat. tit. 36, § 3614.4 Genetic Research Studies Nondisclosure Act Protects research records of subjects in genetic research studies Or. Rev. Stat. § 192.531 et seq. Genetic privacy Applies to all persons x x x Oklahoma x x x x (can request at certain times) x x [] x Not in many instances x (except insurers) [] x [] x x x x x x x [] [] [] x x x (if deidentified) x x (if deidentified) x x x x x x x x x Oregon Applies to insurers; restricts ways genetic information can be used Or. Rev. Stat. § 746.135 No statutes regarding genetic privacy/testing; no general healthcare information statute Pennsylvania Rhode Island South Carolina x R.I. Gen. Laws § 1956 27-18-52, 52.1 Genetic testing Applies to insurers x x x x x x x x (just research) x R.I. Gen. Laws § 1956 27-19-44, 44.1 Genetic testing Applies to nonprofit hospital service corporations that offer health insurance x x x x x x x x (just research) x R.I. Gen. Laws § 1956 27-20-39, 39.1 Genetic testing Applies to nonprofit medical services corporations that offer health insurance x x x x x x x x (just research) x x x (can request at certain times) x x x S.C. Code Ann. § 1976 38-93-10 et seq. Scott Smith, Platte S. Nielson, and Beth Kennedy Privacy of genetic information Applies to insurers x Genetic Privacy Laws: 50 State Survey [] [] x J. Health Life Sci. L., October 2011. © 2011 University of Utah. Used with permission. All rights reserved Genetic Privacy Laws─50 State Survey Who Needs Consent from Patient? This list does not include statutes that exclusively restrict employers, or genetic counseling acts. Key: An x indicates that the statement, prohibition (or whatever the category is) is explicit. [] indicates that the statement is implied. State Statute Act or statute title Forbids Genetic test Applies to disclosure of or analysis health person's defined insurers identity S.D. Codified Laws § 34-14-21 et seq. Informed consent required prior to predictive genetic testing… Applies to "predictive genetic tests" x [] S.D. Codified Laws § 58-1-24 Use of genetic tests in offer, sale, or renewal of insurance prohibited Applies to health insurers; can't use genetic information to determine eligibility x x Tenn. Code Ann. § 56-7-124, 63-2-101 Health information; marketing or sale upon authorization by patient Can't sell identifiable health information without consent Tenn. Code Ann. § 56-7-2701 et seq. Genetic Information Nondiscrimination in Health Insurance Act Applies to insurers; can't use genetic information in determining eligibility Tex. Ins. Code Ann. § 546.001 Use of genetic testing information Utah Code Ann. § 26-45-101 et seq. South Dakota Tennessee Texas Notes No genetic testing statute, but healthcare information statute may apply [] Cannot require / request test Any person Healthcare provider x [] x Applies only to health benefit plan issuers (insurers) x x Genetic Testing Privacy Act Applicable to employers, health insurers x x Utah Code Ann. § 31A-22-1601 to -02 Genetic Testing Restrictions on Insurers Act Just says that the privacy act applies to insurers Vt. Stat. Ann. Tit. 8, § 4724(7)(D), (22) Applies to insurers; can't use Unfair methods of competition or unfair or deceptive genetic information in acts or practices defined determining eligibility Perform / Obtain / access Retain require genetic genetic genetic information information test x x [] Defined as Personal Property, Private, Confidential, or Privileged Exceptions Disclose/release genetic information [] Must notify person that Specific Medical requirements DNA repositories or for consent analysis registries form? was conducted Research or Research if deeducation identified Any purpose if deidentified x Diagnosis Genetic information DNA samples [] [] Specific penalties for genetic privacy violations x x (only defines genetic information) Consent by Patient Required To: x x [] x x [] [] x x x x x x x x Utah [] x Genetic testing Applies to everyone; also specifically applies to insurers; can't use genetic information to determine coverage x [] Genetic information privacy Applies to insurers; can't use genetic information in determining eligibility, with some exceptions x x Vermont Vt. Stat. Ann. Tit. 18, § 9331 et seq. Virginia Va. Code Ann. § 38.2-508.4 x Washington Wash. Rev. Code § 70.02.010 et seq. Medical records─health care information access and disclosure Does not specifically address genetic testing x West Virginia W. Va. Code § 16-29-1 Copies of health care records to be furnished to patients Does not specifically address genetic testing x Wis. Stat. § 146.82 Confidentiality of patient health care records Does not specifically address genetic testing Wis. Stat. § 631.89 Restrictions on use of genetic test results Applies only to insurers; can't condition eligibility on genetic information Wyo. Stat. Ann. § 14-2-710 Confidentiality of genetic testing Re: parentage, but also speaks in broad terms (defines "health care information" to include a person's DNA) x x [] x x x x (if identity of individual is protected) x x x [] [] [] x [] x [] x x [] x [] [] [] [] x (research, with several restrictions) [] x Wisconsin Wyoming Scott Smith, Platte S. Nielson, and Beth Kennedy x x [] x Genetic Privacy Laws: 50 State Survey x [] [] [] [] x x J. Health Life Sci. L., October 2011. © 2011 University of Utah. Used with permission. All rights reserved
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