I noticed a while back that MyHeritage has a restriction against DNA testing if you live in Alaska. It took me a while to find out why as my favorite and several least favorite search engines failed me. However, as I was looking for something else a few minutes ago in a Facebook group, I found a couple of links (one required a log-in that I don’t have, but the other didn’t) – https://www.genomicslawreport.com/index.php/2017/07/18/a-constitutional-challenge-to-alaskas-genetic-privacy-statute/ (at least it didn’t require a log-in when I tried it).
Will be interesting to see how the lawsuit turns out. In general, courts dislike overly vague laws. I don’t know if a court will determine this particular law is too vague, but I expect we will find out in a few years. A faster solution would be for the Alaska legislature to re-write the law in less vague terms and have the governor sign off on it. Personally, I don’t have a problem with states having DNA privacy policies as too many people assume they can upload a relative’s DNA sample anywhere and everywhere without bothering to ask the person. If I ever manage somebody else’s DNA, I would want a signed (as in an actual signature on a piece of paper and not simply an e-mail agreement or a scanned PDF of a signature). Blame my excessive caution on working for several federal and county agencies where you needed a signature on a piece of paper.
From the above link, here is the law in question: http://www.legis.state.ak.us/basis/folioproxy.asp?url=http://wwwjnu01.legis.state.ak.us/cgi-bin/folioisa.dll/stattx07/query=!22genetic+testing!22/doc/%7b@1%7d?firsthit – text included in the quote box below:
Sec. 18.13.010. Genetic testing.
(a) Except as provided in (b) of this section,
(1) a person may not collect a DNA sample from a person, perform a DNA analysis on a sample, retain a DNA sample or the results of a DNA analysis, or disclose the results of a DNA analysis unless the person has first obtained the informed and written consent of the person, or the person’s legal guardian or authorized representative, for the collection, analysis, retention, or disclosure;
(2) a DNA sample and the results of a DNA analysis performed on the sample are the exclusive property of the person sampled or analyzed.
(b) The prohibitions of (a) of this section do not apply to DNA samples collected and analyses conducted
(1) under AS 44.41.035 or comparable provisions of another jurisdiction;
(2) for a law enforcement purpose, including the identification of perpetrators and the investigation of crimes and the identification of missing or unidentified persons or deceased individuals;
(3) for determining paternity;
(4) to screen newborns as required by state or federal law;
(5) for the purpose of emergency medical treatment.
(c) A general authorization for the release of medical records or medical information may not be construed as the informed and written consent required by this section. The Department of Health and Social Services may by regulation adopt a uniform informed and written consent form to assist persons in meeting the requirements of this section. A person using that uniform informed and written consent is exempt from civil or criminal liability for actions taken under the consent form. A person may revoke or amend their informed and written consent at any time.
Sec. 18.13.020. Private right of action.
A person may bring a civil action against a person who collects a DNA sample from the person, performs a DNA analysis on a sample, retains a DNA sample or the results of a DNA analysis, or discloses the results of a DNA analysis in violation of this chapter. In addition to the actual damages suffered by the person, a person violating this chapter shall be liable to the person for damages in the amount of $5,000 or, if the violation resulted in profit or monetary gain to the violator, $100,000.
Sec. 18.13.030. Criminal penalty.
(a) A person commits the crime of unlawful DNA collection, analysis, retention, or disclosure if the person knowingly collects a DNA sample from a person, performs a DNA analysis on a sample, retains a DNA sample or the results of a DNA analysis, or discloses the results of a DNA analysis in violation of this chapter.
(b) In this section, “knowingly” has the meaning given in AS 11.81.900.
(c) Unlawful DNA collection, analysis, retention, or disclosure is a class A misdemeanor.
Sec. 18.13.100. Definitions.
In this chapter,
(1) “DNA” means deoxyribonucleic acid, including mitochondrial DNA, complementary DNA, and DNA derived from ribonucleic acid;
(2) “DNA analysis” means DNA or genetic typing and testing to determine the presence or absence of genetic characteristics in an individual, including tests of nucleic acids or chromosomes in order to diagnose or identify a genetic characteristic; “DNA analysis” does not include a routine physical measurement, a test for drugs, alcohol, cholesterol, or the human immunodeficiency virus, a chemical, blood, or urine analysis, or any other diagnostic test that is widely accepted and in use in clinical practice;
(3) “genetic characteristic” includes a gene, chromosome, or alteration of a gene or chromosome that may be tested to determine the existence or risk of a disease, disorder, trait, propensity, or syndrome, or to identify an individual or a blood relative; “genetic characteristic” does not include family history or a genetically transmitted characteristic whose existence or identity is determined other than through a genetic test.
Chapter 18.15. DISEASE CONTROL AND THREATS TO PUBLIC HEALTH
Article 01. PRENATAL BLOOD TESTS
Sec. 18.15.010. – 18.15.050l Infectious and contagious diseases. [Repealed, Sec. 2 ch 63 SLA 1972].
Repealed or Renumbered
Sec. 18.15.060. – 18.15.110l Physical examination of nonresident employees. [Repealed, Sec. 1 ch 130 SLA 1976].
Repealed or Renumbered
Sec. 18.15.120. – 18.15.137l Tuberculosis. [Repealed, Sec. 12 ch. 54 SLA 2005].
Repealed or Renumbered
Sec. 18.15.138. Penalty. [Repealed, Sec. 13 ch 73 SLA 1995].
Repealed or Renumbered
Sec. 18.15.139. – 18.15.149l Court authorization of detention; title to and inventory of equipment allotted to private institutions; religious treatment for tuberculosis; screening of school employees; limited immunity; definitions. [Repealed, Sec. 12 ch. 54 SLA 2005].
Repealed or Renumbered
Sec. 18.15.150. Taking of blood sample.
Each licensed physician and in the absence of a licensed physician each licensed graduate nurse who attends a pregnant woman for conditions relating to the pregnancy during the period of gestation or at delivery shall take, or have taken, a sample of the blood of the woman at the time of the woman’s first professional visit or within 10 days after the visit, unless the serological test is contrary to the tenets or practice of the religious creed of which the woman is an adherent. The blood specimen shall be submitted to an approved laboratory or clinic for a standard serological test of syphilis. Any other person permitted by law to attend pregnant women but not permitted by law to take blood samples shall have a sample of blood taken by a licensed physician, or on order of a licensed physician, and shall submit the sample to an approved laboratory or clinic for a standard serological test for syphilis.
Sec. 18.15.160. Test for syphilis.
For the purposes of AS 18.15.150 – 18.15.180 a standard serological test is a test for syphilis approved by the department and shall be performed in a laboratory or clinic approved by the department. On request the laboratory test required by AS 18.15.150 – 18.15.180 shall be performed without charge at the laboratories of the department.
Sec. 18.15.170. Report of birth.
In reporting a birth and stillbirth, the physician and other person required to make the report shall state on the certificate whether a serological test for syphilis has been made upon a specimen of blood taken from the woman who bore the child and the approximate date when the specimen was taken. A birth certificate may not state the result of the test.
Sec. 18.15.180. Penalty.
A licensed physician or licensed nurse attending a pregnant woman during the period of gestation or at delivery, or a representative of a laboratory or clinic who violates AS 18.15.150 – 18.15.180 is guilty of a misdemeanor and, upon conviction, is punishable by a fine of not more than $500. However, a person attending a pregnant woman during the period of gestation or at delivery, who requests the specimen in accordance with AS 18.15.150 , and whose request is refused, is not guilty of a misdemeanor.
Article 02. PHENYLKETONURIA (PKU) AND OTHER HERITABLE DISEASES
Sec. 18.15.200. Screening for phenylketonuria.
(a) A physician who attends a newborn child shall cause this child to be tested for phenylketonuria (PKU). If the mother is delivered in the absence of a physician, the nurse who first visits the child shall cause this test to be performed.
(b) The department shall adopt regulations regarding the method used and the time or times of testing as accepted medical practice indicates.
(c) The necessary laboratory tests and the test materials, reporting forms, and mailing cartons shall be provided by the department.
(d) All tests considered positive by the screening method shall be reported by the screening laboratory to the physician and to the department. The department shall provide services for the performance of a quantitative blood phenylalanine test or its equivalent for diagnostic purposes. A confirmed diagnosis of phenylketonuria shall be reported to the physician and to the department. The department shall provide services for treatment and clinical follow-up of any diagnosed case.
(e) When presumptive positive screening tests have been reported to the department, it shall provide, on request, either the true blood phenylalanine test or subsidize the performance of this test at an approved laboratory.
(f) A licensed physician or licensed nurse attending a newborn or infant who violates this section is guilty of a misdemeanor and, upon conviction, is punishable by a fine of not more than $500. However, a person attending a newborn or infant whose request for appropriate specimens from the newborn or infant is denied by the parent or guardian is not guilty of a misdemeanor. The fact that a child has not been subjected to the test because a request for appropriate specimens has been denied by the parents or guardian shall be reported to the department.
(g) In this section, “physician” means a doctor of medicine licensed to practice medicine in this state, or an officer in the regular medical service of the armed forces of the United States or the United States Public Health Service assigned to duty in this state.
Sec. 18.15.210. Testing for certain other heritable diseases.
The department shall administer and provide services for testing for other heritable diseases that lead to mental retardation and physical disabilities as screening programs accepted by current medical practice and as developed.
Article 03. HEPATITIS B
Sec. 18.15.250. Vaccination program for volunteer emergency personnel.
(a) The department shall establish a program under which hepatitis B testing and vaccination is reasonably accessible at no charge to all volunteer emergency medical and rescue personnel in the state who provide an emergency medical or rescue service primarily within an unincorporated community or within a municipality that does not provide funding for the service.
(b) A municipality that has the power to do so shall establish a program under which hepatitis B testing and vaccination is reasonably accessible at no charge to all law enforcement officers and all volunteer or employed emergency medical and rescue personnel who provide service to the public within the municipality. The department shall, upon request, assist a municipality in establishing a program required under this subsection.
(c) The Department of Public Safety shall establish a program under which hepatitis B testing and vaccination is reasonably accessible at no charge to all officers of the state troopers. The Department of Health and Social Services shall, upon request, assist the Department of Public Safety in establishing a program required under this subsection.
(d) In this section,
(1) “emergency medical and rescue personnel” means a trauma technician, emergency medical technician, rescuer, or mobile intensive care paramedic;
(2) “employed” means that the person is a paid employee of a first responder service, a rescue service, an ambulance service, or a fire department that provides emergency medical or rescue services as part of its duties;
(3) “law enforcement officer” means a member of the police force of a municipality;
(4) “volunteer” means that the person is an active volunteer of a first responder service, a rescue service, an ambulance service, or a fire department that provides emergency medical or rescue services as part of its duties.