Lawsuit alleges unauthorized publication of personal genetics data
Cyrus Farivar reports:
In his suit, Michael Cole alleges that months after purchasing a Family Tree at-home genetics kit and joining a “project,” an online forum for people doing related research about their ancestors, “the results of his DNA tests were made publicly available on the Internet, and his sensitive information (including his full name, personal e-mail address, and unique DNA kit number) was also disclosed to third-party ancestry company RootsWeb (a subsidiary of Ancestry.com, a company that allows users to research their lineage).”
Read more on Ars Technica. A helpful commenter posted the relevant Alaska law on DNA samples:
Chapter 18.13. GENETIC PRIVACY
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.