After being severely injured in a house fire that killed three others, Tammy Adacsi, a Canadian woman in her mid-thirties, decided to sue the landlords of the house for negligence . Ms. Adacsi claimed that she suffers from carbon monoxide poisoning, pneumonia and post-traumatic stress disorder from the fire, preventing her from returning to work. In court, the defendants argued that because Adacsi has a strong family history of Huntington’s disease (HD), many of the symptoms she claimed are associated with the incident may be a result of the onset of the disease. The court then ordered her to undergo genetic testing for HD.
Adacsi objected to the test, arguing before the Alberta Court of Appeals that the test would cause her additional anxiety, pain and suffering. However, the Court of Appeals upheld the prior decision, declaring that the defendants have a right to access evidence associated with the damages claim. “If the blood test shows that [Huntington’s] to be a live possibility, it may indeed be relevant to assessing damages,” the three-judge panel stated. “Since the appellant has chosen to sue for damages, she cannot deprive the respondents from acquiring evidence that may assist in their defense.” Though the landlords pleaded guilty and were fined $90,000 for health and safety violations in 2009, if the testing reveals a high susceptibility for the disease, Adacsi will receive significantly less compensation for the more recent charges. Adacsi underwent the genetic test in the summer of 2013. The case will move forward once the results become available.
The legal ruling raises a variety of ethical and privacy concerns related to the treatment of personal genetic information. Critics argue that mandated genetic testing for diseases by employers and insurance companies is a form of discrimination. In 2008, the Genetic Information Nondiscrimination Act (GINA) became law in the U.S., prohibiting employers and health insurance companies from discrimination on the basis of genetic information . However, Canada lacks substantial legislation on this issue . Additionally, current genetic testing is limited—it cannot demonstrate whether an individual necessarily has a disease, the time of onset or severity of symptoms; it can only portray susceptibility or risk of development.
Many argue that individuals have the right to maintain discretion over their own genetic information; to decide what they want to know about their own health. “To force someone to learn this information is, I think, taking away a basic human right,” said Bev Heim-Myers, CEO of the Huntington’s Society of Canada . “Genetic information is personal information. We all have a right to know or not to know what’s in our genome.” Revealed genetic information about an individual can impact the privacy rights of close family members. The need to undergo such testing can also deter plaintiffs from moving forward in legitimate lawsuits.
As Dr. Maya Sabatello points out, the Canadian lawsuit is particularly complicated because it advances justice by providing a more accurate assessment of damages, but simultaneously obstructs justice by infringing on Ms. Adacsi’s rights . Of similar concern is how the defendants acquired the knowledge that Adacsi had a family history of HD, and what guidelines exist for determining the pertinence of mandated genetic testing in legal proceedings.
This article is part of the Spring 2014 issue of Professional Ethics Report (PER). PER, which has been in publication since 1988, reports on news and events, programs and activities, and resources related to professional ethics issues, with a particular focus on those professions whose members are engaged in scientific research and its applications.