By Maya Sabatello
Genetic testing to identify the susceptibility of individuals to developing specific disorders or to confirm diagnoses is becoming increasingly common in clinical settings, where it raises a string of ethical and medical dilemmas, including about the scope of its use, its reliability and safety, and the management of confidentiality and disclosure of genetic information. Now, genetic testing is making its way into the courts–and it may be cause for concern. A recent decision by the Court of Appeal of Alberta, Canada ordering a woman to undergo a genetic test for Huntington’s Disease (HD) shows how genetic tests can advance – or obstruct –justice.
In this case, Tammy Adacsi, a woman in her late thirties, sued the landlords of a house she was staying in after it caught fire. Three people died in the fire. Ms. Adacsi survived but was hospitalized for several months, after which she claimed that her debilitating injuries prevented her from ever working again. In response, the landlords requested that Ms. Adacsi be ordered to submit to a blood test to determine whether she is a carrier of the mutant gene for HD, an inherited neurodegenerative genetic disorder that causes uncontrolled movements, emotional problems, personality changes, and a decline in thinking and reasoning abilities. According to court records, HD runs in Ms. Adacsi’s family and medical professionals have indicated that some of her symptoms may be due to the disorder, and not the house fire.
Ms. Adacsi’s objected to the test, saying that it would cause her severe panic, stress and anxiety, and further her pain and suffering. The landlords argued that determining whether Ms. Adacsi has HD would greatly affect the amount of damages to which she might be entitled. The court ordered the test, finding that while it would not determine whether Ms. Adacsi’s symptoms were a result of HD, the test would indicate whether this option could be eliminated as a possible explanation. The court noted that although a blood test is intrusive, it involved no real health risks to Ms Adacsi. The court concluded that, on balance, “the potential good to be achieved outweighed other considerations, such as the [Ms. Adacsi’s] reluctance to be tested.”
To be sure, there are some good reasons to support such a court order. Because tort law is (mostly) a fault-based system, defendants, such as the landlords, are not held liable for losses they did not cause. Whether Ms. Adacsi’s debilitating conditions are the result of the fire or of HD is thus a relevant question, and a test could arguably sway the scales of justice in the right direction. Besides, genetic tests are not new in judicial proceedings; in fact, the use of DNA sequences for identification purposes has revolutionized criminal justice and family law –arguably, for the good. Some may thus view genetic testing for health conditions as a natural and positive extension of what we already have. But is it, really?
Unlike DNA testing for identification purposes, which gives a highly accurate “match,” genetic testing can usually only predict an increased risk for the condition. Even in the case of HD, where presence of the gene assures onset of the condition, a positive test result cannot predict the time of onset, severity, or progress of symptoms, which can vary significantly. The extent to which judges understand these nuances is not well studied. Especially when there is uncertainty about the source of a person’s symptoms (as here, were they caused by the fire or HD?), a positive test result might be given greater weight than it merits.
Genetic testing for disorders also endangers privacy in ways that far exceed other contexts. The information provided can influence an array of personal choices – from medical care to diet and reproduction. Moreover, because many genetic disorders are inherited, a positive result reveals personal health information about both the tested person and other family members not involved in the case, and exposes them to the stigma and discriminatory attitudes that accompany some genetic conditions. For these reasons, voluntary testing has been the bedrock of medical practice. Disregarding this complexity in legal proceedings might serve as a strong deterrent to a potential plaintiff who is considering filing even the most legitimate suit.
Privacy is also endangered in another way. It is unclear in this case how the landlords obtained information about Ms. Adacsi’s family history of HD – although it clearly had a significant impact on the court. And although in this particular case the possibility of HD may not have been frivolous (at law, claims must have probative legal or factual merit in connection with the contested issue), it is unclear what level of evidence will be required to pass this non-frivolous test. That is, what information should judges use to draw the line between plausible and tenuous arguments for why a person should be ordered to have a genetic test? In the future, this may turn out to be a pivotal question e.g., when individuals with a family history of psychiatric disorders (such as depression) request compensation for emotional harm. What are the limits of searching (or stalking) for such personal data about litigants and their family? The court left this question wide open, as it merely forewarned that, once a person chooses to sue for damages, “she cannot deprive the respondents from acquiring evidence that may assist in their defense.”
The Alberta case raises another question: what weight should judges give to the possible negative effects of disclosure of genetic information? Ethicists and medical practitioners have debated this question in medical contexts, but what about in courts? In this case, the court distinguished between stress and anxiety from undergoing the test itself and fearfulness of the knowledge that could result from the test, practically overriding Ms. Adacsi’s objection on the basis that she explicitly mentioned only the former. Quite intuitively, this is an artificial distinction – after all, it is clearly not the fear of the needle that is stressful but the genetic information that will be revealed. Yet even if this distinction aimed to “fit” the court’s assessment of this case, one might wonder about the appropriateness of judicial discretion to simply disregard such psychological risks.
As technologies to identify genetic proclivity for disorders are rapidly developing, the Alberta case illustrates some of the challenging questions that courts are increasingly likely to face. But what the interplay between law and longstanding principles in medical ethics and practice will be, and whether these technologies will serve justice, is yet to be seen.
1. Josephine Johnston, The FDA and 23andMe: Overreaching and overreacting? December 20, 2013, http://braingenethics.cumc.columbia.edu/the-fda-and-23andme-overreaching-and-overreacting/
2. Klitzman, Appelbaum and Chung, “Return of Secondary Genomic Findings vs Patient Autonomy: Implications for Medical Care,” JAMA 310(4)(2013): 369-370; Klitzman, Am I My Genes? (OUP, 2012).
3. Adacsi v Amin, 2013 ABCA 315, Docket 1201-0330-AC, Sep. 20, 2013.
4. Kaye and Sensabaugh, “Reference Guide on DNA Identification Evidence,” pg 129-210, In Reference Manual on Scientific Evidence, Federal Judicial Center and National Research Council, eds, (The National Academies Press, 3rd edition, 2011).
5. Phelan, “Geneticization of Deviant Behavior and Consequences for Stigma: The Case of Mental Illness,” J. of Health and Social Behavior 46(2005): 307-322; Pescosolido et al, “”A Disease Like Any Other”? A Decade of Change in Public Reactions to Schizophrenia, Depression, and Alcohol Dependence,” American Journal of Psychiatry 167(11)(2010: 1321-1330.
6. Paul S. Appelbaum, Genetic Information Not Always Benign, December 23, 2013, http://braingenethics.cumc.columbia.edu/genetic-information-not-always-benign/