Privacy in the Age of Consumer Genetic-Testing - Harrison Gray

The growing industry of private genetic testing has allowed people to explore their own ancestral history as well as connecting with previously unknown relatives. The ability of modern technology to analyze the basic genetics of people has allowed them to see their own cultural and ancestral history and has become a common and utilized service in the recent years. While this new technological and scientific development has excited many people across Canada, it opens the door for new legal questions relating to the privacy of individual persons. Section 8 of the Charter of Rights and Freedoms states that “everyone has the right to be secure against unreasonable search and seizure.”[1] This right is meant to provide Canadians with privacy against unreasonable intrusions by the government. An important case relating to Section 8 of the Charter is the case of Hunter v. Southam. This case was important in establishing that in any search and seizure operation, prior authorization is necessary.[2] Importantly, section 8 has been interpreted to protect against an unjustified search and seizure before they happen and not to determine after the fact whether the search and seizure can be justified. The case of Hunter v. Southam established a basic minimum that is required for search and seizure. Justice Dickson writes in the Hunter case that “reasonable and probable grounds, established upon oath, to believe that an offence has been committed and that there is evidence to be found at the place of the search, constitutes the minimum standard, consistent with s. 8 of the Charter, for authorizing search and seizure.”[3] This case is certainly important for establishing benchmarks for what is necessary for search and seizure to be compliant with section 8 of the Charter.

Application to Consumer DNA Testing

The common law has many cases that involve the question of whether obtained evidence is within the requirements laid out in the Hunter v. Southam case. What is intriguing for the future of the law is how the case law for physical genetic evidence will be applied to novel cases involving electronic DNA databases. For example, the case of R. v. Stillman was a case involving the investigation of Mr. Stillman after he was suspected of a brutal sexual assault and murder of a 14-year-old girl.[4] Without Mr. Stillman’s consent, the police collected pubic hair, scalpel hair, teeth impressions, and a tissue with his mucous in it he discarded in the garbage. Because Mr. Stillman had not given consent to any bodily fluids being taken from him, the majority in the Supreme Court of Canada held that the taking of these elements was a violation of the right provided in section 8 of the Charter.[5] Despite his status of being under arrest, which would lower the threshold for search and seizure, the court still held that this was not enough to constitute taking his bodily fluids without his consent. What is intriguing, as we go into the age of consumer DNA testing, is that the court stated that voluntarily abandoned fluids would be fair game for the Crown to seize. With this is mind, the question is: how can this apply to genetic information in a third-party database? On one hand, we can say that the court has stood up for the rights of the individual to security of their body against intrusion by the state, but also that abandoned DNA samples are reasonable for the state to seize.[6] If one voluntarily signs up for a consumer DNA genetic test, are they abandoning the autonomy of their DNA information? Or could it be said the seizing of DNA information from these companies by the government without consent of the individual constitutes a violation of section 8 of the Charter? The answers to these questions may lie in a new piece of government legislation known as Bill S-201, or the Genetic Non-Discrimination Act.[7]

The Genetic Non-Discrimination Act received Royal Assent in 2017. The act allows people to retain control over their personal genetic information. Without consent, genetic information obtained through direct-to-consumer genetic tests belongs to the individual and cannot be disclosed to anyone or any business, insurance agency, employer etc.[8] This act provides a massive shield to those who partake in genetic testing for consumer purposes. It would be easy to say, because of the Genetic Non-Discrimination Act, that this is an issue that has been resolved legally. To say this would be to ignore future situations that, although have yet to emerge in the common law, are foreseeable in the coming years. Although protection against your genetic information being taken from these companies without your consent has been prohibited through Bill S-201, what does this act do to prevent genetic information of relatives being used against you? Could the government use DNA information, obtained through third party companies, of a parent or a sibling as evidence against you? If this information were to be given up willingly by a close relative, would this constitute a violation of section 8 of the Charter? This question is an intriguing hypothetical for Canada that has already occurred in the United States.

The police force of the United States used DNA databases to solve a cold case that dated back all the way to 1980.[9] By using DNA tests from relatives of the accused, they were able to use DNA from the scene of the crime to discover that a man named James Clanton was the culprit they had been looking for over the past 40 years. Clanton was convicted for the brutal rape and murder of a 21-year-old woman using this new technique of analyzing genetic databases of relatives.[10] From a moral and public perception perspective, being able to solve these profoundly disturbing and heinous crimes would be considered a positive for the safety of the public and for justice. However, cases like this present the question of whether these DNA databases have caused a loss of privacy over an individual’s personal genetic information. James Clanton never consented to having his DNA surrendered to the state, but due to relatives having their information available, the privacy of Mr. Clanton was no longer under his control. If a case such as Clanton’s occurred in Canada, what would the result be? The Genetic Non-Discrimination Act does not give one control over their relative's personal genetic information.[11] So where does this lead us in a legal sense? In R. v. Stillman we saw that the court said abandoned bodily information can be fairly obtained by the state in a case against an accused.[12] It would be reasonable to say that abandoned genetic database information surrendered by relatives is fair game to use against the accused. If this was the case, then the Genetic Non-Discrimination Act does not provide the blanket of protection for the accused it may have been purported to do. Until case law of the type we saw in the Clanton case emerges in Canada, we are in a state of vagueness when it comes to this truly modern issue. If this type of evidence becomes admissible in Canada, we also become susceptible to unfairness and discrimination in the court system. The future of genetic consumer testing will involve trying to identify genetic abnormalities, as well as predispositions to diseases and disorders. If there is an increase in this type of genetic testing, are we opening the door for those with families with genetic abnormalities to become more likely of a conviction than those who are not? But if we do not allow this type of evidence to be used, are we not banning an effective tool in bringing those guilty of some disturbing crimes to justice? As it stands now, there is not enough case law to say in any definitive way what would happen in a comparable situation, but allowing the genetic evidence obtained through relatives could be seen as a way to get around section 8 of the Charter and the Genetic Non-Discrimination Act.

Overall, the questions that are brought about by consumer genetic-testing are yet to be answered through case law and instead must be analyzed by looking at both the Genetic Non-Discrimination Act and the rights provided to individuals in section 8 of the Charter. Although legislation has been passed to help protect genetic privacy, it is yet to be encompassing enough to answer all the questions that the legal system in Canada will be required to answer soon. Arguments for both sides of this issue have moral and legal ground to stand on, and only when we finally see a case on this specific issue will we see how the common law will answer these profound questions.

[1] Canadian Charter of Rights and Freedoms, s 8, Part 1 of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (UK), 1982, c 11. [2] Hunter v Southam Inc, [1984] 2 SCR 145. [3] Ibid at paras 156–57. [4] R v Stillman, [1997] 1 SCR 607 at para 1. [5] Ibid at para 63. [6] Ibid at para 62. [7] Bill S‑201, An act to prohibit and prevent genetic discrimination, 1st Sess., 42nd Parl., 2017. [8] Ibid, s 3(1). [9] Neal Vigdor, “Nearly 40 after College Students Stabbing Death, Genetics Records Lead to a Suspect” (16 December 2019), online: The New York Times <www.nytimes.com/2019/12/16/us/helene-pruszynski-james-curtis-clanton.html>. [10] Ibid. [11] Bill S-201, supra note 7. [12] Stillman, supra note 4 at para 8.