Do children have a right to their parents’ medical information?

Shaun Raviv and Mosaic:

I told the Pates about ABC’s case and the worry that it could theoretically push the duty of care too far in the U.K. They said that their lawyer mentioned a similar concern with Heidi’s case back in the early 1990s, when HIV was still essentially untreatable and killing thousands of Americans. The lawyer said the judges would not want to set a precedent that if you have HIV, your doctor would have to tell every person you’ve ever had sex with. “They wanted to put some sort of a dam up to hold that back, because they didn’t want to turn this into a free-for-all,” Heidi tells me. But in the end, the Florida court’s decision to allow Heidi to argue her case did no such thing. It did not open any floodgates.ABC’s lawyer, Jonathan Zimmern, believes that clinical geneticists are already practicing medicine in the manner that ABC wishes her father’s doctors had. He’s spoken, informally, with many clinical geneticists about the case. “They all feel that what we were fighting for is what clinical geneticists do on a daily basis,” he tells me.Clinicians “already act and feel as though they have a professional duty to someone other than their patient or the person who provided the original genetic sample,” Zimmern says. And if they already practice this way, he doesn’t understand why the NHS is so adamant about denying ABC in court. “It seems to me they are fighting a battle on behalf of doctors who don’t want the battle to be fought.”That said, ABC could alter the law by legally extending a doctor’s obligations. “It’s a very minor extension of the duty that clinicians were already operating under,” says Zimmern, “but it is kind of a significant development in the law, just because we’ve always had that line in the sand—that the clinician’s duty is only to the patient and to no one else.”Zimmern says that the U.K. Court of Appeal has, in a sense, already pushed past a new boundary. An important legal precedent has already been set: that arguably in genetic cases there is a duty of care to someone other than the patient. “If we win the underlying case now, it’s kind of just reinforcing what is already there. But if we lose, it doesn’t overturn the Court of Appeal decision,” says Zimmern. “As the years or the months go by, if any other case arises like this, everyone is going to rely on that decision, and it’s likely to become law.”A common saying among legal practitioners is that hard cases make bad law. “My concern as a lawyer is I don’t really trust the law,” says Graeme Laurie. “I don’t trust the law not to run away with the precedent and introduce more uncertainty into the doctor-patient relationship.”Whether ABC will, or should, open the floodgates is a difficult question. Any precedent that will change the dynamic of doctor and patient must take into account a nearly infinite number of complexities. Perhaps it’s better to keep things simpler, to maintain that doctors are responsible to their patients only, except in truly extraordinary circumstances. “It’s a genuine dilemma,” Laurie says. “It’s not absolutely clear what is the right thing to do.”This post appears courtesy of Mosaic. Graeme Laurie and Anneke Lucassen receive funding from Wellcome, which publishes Mosaic. We want to hear what you think. Submit a letter to the editor or write to letters@theatlantic.com. Shaun Raviv is a freelance writer based in Atlanta, Georgia. Twitter Mosaic is a digital magazine that focuses on science. It is published by the Wellcome Trust.
Jul 14, 2018