Canadian Lawyer

muddiness. "Somebody has to interpret whether this is a significant risk or is this the kind of decision-making we can leave up to parents," says Lemmens. And because it is so fraught, he adds, "Maybe we will have to create a decision-making body to decide in these instances." And even more problematic — if pos- ed, but when the mother learned, "I got this ugly phone call from her, sible — was the young boy with symptoms of heart disease who came to Partners for testing. He, too, tested positive for one of the HCM genes and then his mother was tested. She didn't carry the gene. Mendel' laws of dominant genetic inheritance tell us absolutely the father and his side of the family carried the gene. Samantha Baxter, a genetic counsellor at Partners, told the mother to tell the father and his brothers and sisters about the test results so they could test themselves and their children. However, "The mother was going through a rough divorce, Baxter, "and as she put it, 'the dad's side s " says of the family no longer are her relatives, no longer are somebodies she needed to care about.'" As a consequence she said she wasn't going to tell them and neither should the lab. What would the law say was Partners' Baxter, "where she threatened to sue me because how did they find out these vari- ants when she told us not to tell them. And we said we never said anything, but she was still livid. So the nieces and nephews were test- " says for the future of rare heart diseases cases and the knots And what does all the above portend its application threatens " to tie the law, lawyers, and regulators in? "This was the story that everyone thought was going to play out, and in this little uni- verse it has," the hyper-skeptical Caulfield tells me when I describe to him what has been happening with arrhythmias. "All of these old-school concerns are arising. " Some of the research for this article was funded by a Canadian Institutes of Health Research Journalism grant. "duty to warn" responsibility in the face of an explicit demand by the legal guardian of the child who was their formal patient to say nothing? Knoppers points out doctors can give letters with test results to patients and the patients in turn are supposed to send the letters to potentially affected family members. "If a person refuses the letter, the doctor sends infor- mation to the public health officer and the public health officer is mandated to then contact family members without revealing the identity of the patient," she says. Such a system does not presently exist in this country. So what did happen? In the instance that in France of the lesbian mothers, Partners accepted that the women as legal guardians had the right not to test their children, but encour- aged them to monitor the children regu- larly for any signs of heart disease. In the bitter divorce case, Baxter says the mother "somehow had told her sister the testing results and the sister said these results aren't about us and she relayed them to everybody on the father' s side." www.CANADIAN Lawyermag.com M AY 2012 35 LL-PROMO_CL_Mar_12.indd 1 12-02-15 2:28 PM

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