Direct-To-Consumer Ancestral and Genetic Testing: Newest Wrinkle in Civil Litigation?
August 21, 2018
Consumer DNA testing services have surged in popularity in recent years. One report estimates that the market could triple in value from $99 million in 2017 to $310 million by 2022.1 Companies like 23andMe, AncestryDNA, Family Tree DNA and MyHeritage provide direct-to-consumer genetic testing services for individuals interested in learning about and exploring their DNA.
With direct-to-consumer genetic testing services, customers can learn a variety of ancestral and health information about themselves and their families by, for example, submitting saliva samples to the company’s genetic database. To illustrate, the company 23andMe has an “Ancestry Service” which provides reports on ancestry composition, maternal and paternal “haplogroups,” Neanderthal ancestry, and a customer’s “DNA family,” where a customer can get an overview of a diverse group of people who share his or her DNA. The Ancestry Service also includes a “DNA Relative Finder” for opt-in, where a customer can find and connect with relatives in the 23andMe database who share his or her DNA. In addition, 23andMe also has a “Health + Ancestry Service” which provides reports on ancestry, plus reports on genetic health risks, carrier status, wellness, traits and inherited conditions.
Knowledge, however, comes at a price. These companies collect the information they receive when you use their services, including cookies and other similar tracking technology, any information you provide directly, including registration information provided at account set-up, and DNA and genome information.2 23andMe posts on its website that it will not sell, lease, or rent a customer’s individual-level information to any third party or to a third-party for research without his or her explicit consent.3 The company also explains that it does not share customer data with any public databases, that it does not provide any person’s data (genetic or non-genetic) to an insurance company or employer and that it will not provide information to law enforcement or regulatory authorities unless required by law to comply with a valid court order, subpoena or search warrant for genetic or personal information.4
While 23andMe states it will use all practical legal and administrative resources to resist such requests, under certain circumstances it may be required by law or court order to make a disclosure about a customer’s genetic or personal information.5 If a required disclosure occurs, the company will notify the customer in advance, unless doing so would violate the law or a court order, such as a gag order. Unless notifying the customer would violate the law or a court order, 23andMe states it will give the customer a reasonable period of time to move to quash the subpoena before it answers any request for information.6
Genetic data collection has already yielded profound legal consequences. Notably, investigators in California in April 2018 arrested 72-year-old Joseph James DeAngelo and identified him as the Golden State Killer, a mass murderer who is believed to be responsible for at least 12 murders, 45 rapes and 120 home burglaries throughout the 1970s and 1980s, by using a genealogical website(s) that featured genetic information from a relative.7 The suspected Golden State Killer was not actually in the particular database, but because a distant relative was, that relative’s DNA partially matched evidence related to the serial killer.8 Because of this technology, the number of suspects shrank from millions down to a single family. Police then used traditional investigative techniques match their suspect to the crime.9
GEDmatch, a free service that exists to provide DNA and genealogy tools for comparison and research purposes as a meeting place for anyone tested by any major genetic genealogy testing company, confirmed that police used the site to crack the case.10 While 23andMe and AncestryDNA have refused law enforcement requests (unless required by law or court order), GEDmatch allows for raw DNA data obtained or authorized by law enforcement to identify a perpetrator of a violent crime against another individual.11
Considering the increasing popularity of these genetic-testing-to-consumer sites and the rising use of information obtained from these services in the criminal context, how may genetic information on ancestry and health from these sites play a role in civil litigation?
Conceivably, in every case in which the plaintiff seeks to recover for permanent or long-term disability or lost future earnings, regardless of the case theory, the defendant could seek to discover the plaintiff’s risk of premature incapacity or mortality by obtaining genetic records or performing genetic testing.12 For example, several genes are associated with adult-onset disorders, which relate to damages in personal injury litigation.13 Such application to damages can be broadened and relevant to the defendant in a medical malpractice case. In addition, a defendant in an asbestos action may wish to explore whether a plaintiff’s alleged work-related cancer is wholly work related or rather primarily contained in that person’s genotype as an element of causation. The discovery of medical records in this context is common.
The collecting of genetic information is already permitted in paternity cases14 and could conceivably prove relevant to other domestic relations contexts, including child custody and adoption. Consider, for example, identifying future health risks in a proposed parent’s genetic profile. If a parent in a child custody or adoption case participated in one of these genetic-testing-site services, should the results be subpoenaed or available through discovery and weaponized against them? Indeed, these results may play a role in the adjudication of a child custody dispute, termination of parental rights or adoption case, which courts often analyze under a standard focusing on the best interests of the child.
The possibility that a person’s genetic information can be used against them in a civil proceeding also implicates the possibility that such information can be discoverable for other purposes, such as to force another party to mediate or settle. While, West Virginia, for example, does not currently have a statute prohibiting the use of genetic information in legal proceedings, its legislature proposed in 2010 a Genetic Information Privacy Act to protect the genetic privacy of individuals and encourage individuals to submit to genetic tests without fear of unauthorized collection, use or analysis of their identifiable DNA and other genetic information. If passed, such a bill would protect against genetic testing and information being admissible evidence or discoverable information in any court proceeding.15
As direct-to-consumer genetic testing services become more popular, it is important to keep in mind the increasing possibility that results will be used in litigation. While it will be important to watch the developing use of results obtained from the tested individuals themselves via discovery or subpoena tools, it will also be interesting to see how information obtained from their relatives will be utilized in the future of civil litigation. However, while human genetic information may fall within the general meaning of health and medical information, the cumulative effect of such personal, predictive and familial qualities of genetic information may distinguish it from being covered by the broad category of general health and medical information.16 Whether protective orders or new and proposed statutes, rules or legislation will protect an individual’s results from use in civil litigation is likely to be a relevant legal and ethical issue amidst this changing technological frontier.
1 KALORAMA INFORMATION, The Market for Direct-to-Consumer Genetic Health Testing (Jan. 10, 2018), https://www.kaloramainformation.com/Direct-Consumer-Genetic-Health-Testing-11370673/.
2 23ANDME, Privacy Statement, https://www.23andme.com/about/privacy/ (updated July 17, 2018).
3 Id.
4 Id.
5 23ANDME, Guide for Law Enforcement, https://www.23andme.com/law-enforcement-guide/.
6 Id.
7 Avi Selk, The Ingenious and ‘Dystopian’ DNA Technique Police Used to Hunt the ‘Golden State Killer’ Suspect, WASH POST, Apr. 28, 2018, https://www.washingtonpost.com/news/true-crime/wp/2018/04/27/golden-state-killer-dna-website-gedmatch-was-used-to-identify-joseph-deangelo-as-suspect-police-say/?utm_term=.8eef80e648e0.
8 Id.
9 Id.
10 Id.
11 GEDMATCH, Terms of Service and Privacy Policy, https://www.gedmatch.com/tos.htm (updated May 20, 2018).
12 Mark A. Rothstein, Preventing the Discovery of Plaintiff Genetic Profiles by Defendants Seeking to Limit Damages in Personal Injury Litigation, 71 IND. L.J. 877, 878 (1996).
13 Id. at 881.
14 For example, West Virginia Code § 48-24-103 states that, prior to the commencement of an action for the establishment of paternity, the Bureau for Child Support Enforcement or the court may order the mother, her child and the man to submit to genetic testing to aid in proving or disproving paternity. W.Va. Code § 48-24-103.
15 The bill was referred to the House Health and Human Resources Committee. See H.B. 2720, 2010 Leg. Reg. Sess. (W.Va. 2010), http://www.wvlegislature.gov/Bill_Text_HTML/2010_SESSIONS/RS/Bills/hb2720%20intr.htm.
16 William Keough, Human Genetic Information, Genetic Registers and the Subpoena Duces Tecum: Balancing Privacy, Confidentiality and the Administration of Justice, 16 BOND L.REV