Canadian Lawyer

her son would die young and thus removal violated a primal dictum of medicine: First do no harm. Here' justify her fears. Aided by family bibles, Newfoundland geneticists have deter- mined that half the men who carried the gene were dead by the age of 40 and 80 per cent by 50. And, at the time that deci- sion went to court, not a single man who had had a defibrillator implanted had died from subsequent heart attacks. With this in mind, the Eastern Health s some additional background to heart surgeons themselves were complete- ly uncertain how to respond to the man' request, says Kathy Hodgkinson, an assis- tant professor of medicine at Memorial University whose doctoral thesis is on the Newfoundland ARVC gene. "If it was a drug he was taking, he could have quite happily made the decision to stop taking it any time he wanted. But in this case the s months later the man's body made a dif- ferent judgment. He had the heart attack his genetics said was almost bound to happen. By good fortune, he was near a place where resuscitation equipment was available and he was saved. What did he do then? He decided that the defibrillator was worth it and had it reinstalled. All of this leads to the knotty question of what will doctors do the next time a person who carries the fatal gene comes forward and asks to have the defibrilla- tor removed? Will any of them refuse to do it because there is now overwhelming evidence of ICD' rates in men with defibrillators are today a tenth of those without — and so removal is patently harmful? Nobody is entirely sure because the correct genetic heart arrhythmias balance between the prin- ciples of "first do no harm" and "informed consent" is cloudy. s effectiveness — death "I am increasingly interested in the clash between what we might call common sense and what the legal system tells doctors to do. I think there is an emphasis, some would say doctors themselves had to act," she says. "And there were no rules and precedents for them taking things out." Nonetheless, the case was decided on what were narrow grounds. While the mother' doing what any loving mother might do if she is convinced her son is not thinking rationally and is putting his life at risk," — Newfoundland and Labrador Supreme Court s feelings were noble — "She is man was not a child and was competent to make his own decisions. With that in mind, the doctrine of informed consent was invoked, and the Canadian Health Care Practice manual was quoted: "a com- petent can refuse any medical treatment regardless of treatment and regardless of whether it was necessary to preserve life. Justice James Adams noted the Ergo, the mother didn't have standing to sue and the man had a right to ask doctors to take out the defibrillator. Narrow and precedented, except a few " tion but one that may be looming. But because of the prevalence of ARVC in Newfoundland and the sharp decline in the cost of genetic testing, there is a dis- cussion of whether the province should test all babies for the disease at birth. And if they did shouldn't that informa- tion be forwarded on to Newfoundland' driver examination centres? Or conversely should there be a law in place that says if you carry the "Newfoundland curse" gene you can't get a driver' s haven't been tested and had a defibrillator installed? Again clouds. Knoppers leans toward s licence if you yes, pointing to existing laws related to denying licences to people with conditions like epilepsy. "If I am a third generation of epileptic and have decided not to get tested, yes, I think you shouldn't be able to get a driver' overemphasis, on individual autonomy." TRUDO LEMMENS, UNIVERSITY OF TORONTO. clause, which says I can't in conscience do that," is how Bartha Knoppers, a McGill University law professor who is also direc- tor of the Centre of Genomics and Policy, suggests one scenario might play out. "I am increasingly interested in the clash between what we might call common sense and what the legal system tells doc- tors to do. I think there is an emphasis, some would say overemphasis, on indi- vidual autonomy, "Doctors could exercise the conscience Dr. William M. Scholl chair in health law & policy at the University of Toronto. However, he also points out that doctors have to respect the fact that "people make many unwise choices." But what if the unwise removal result- " says Trudo Lemmens, ed in a person having a heart attack while driving and killing others? Should you not be allowed to drive if you carry the gene and haven't had a defibrillator implanted or had it removed? It is not an idle ques- teaches tort law and health care ethics and the law at the University of Alberta, is more skeptical. "I think it would be extraordi- nary if the province had access to health records. You would need rules to do that. I don't think that there would be very many people in favour of that kind of legislation." But at the least should there be genetic s licence." Erin Nelson, who tests for the condition before you can get a driving-related job? The Newfoundland cardiologists and geneticists have already had to deal with a case related not to driv- ing but flying. A man without symptoms — again that must be emphasized — was first told he didn't carry the ARVC gene and then, while studying to achieve his lifelong ambition of becoming a pilot, he was told he did have it. He was quite angry and didn't want to change his life' dreams based on what might be in the future or something not presently wrong with him. After much discussion, the doctors were able to convince him to drop out of flight school. But what if reasoning hadn't worked, s and even more to the point, what if the connection between a gene defect and a subsequent heart attack was more dif- fuse? The Gitxsan' is much more predicatively problematic than Newfoundland' cent of long QT carriers the first sign of the disease is a heart attack. In 35 per cent of people, carrying the disease has no apparent heart disease effect. In the rest, www.CANADIAN Lawyermag.com M AY 2012 33 s version of long QT s ARVC. In 15 per

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