Rising prices for new, transformative therapies are challenging health systems around the world, leading many payers and providers to begin rationing access to treatments, even in the countries that have been most resistant to doing so. This is the case for direct-acting antivirals (DAAs) for the treatment of hepatitis C virus (HCV). However, little attention has been paid to the increasing role that human genetics might play in rationing decisions. Researchers have already proposed that genetic markers associated with spontaneous HCV clearance could be used to restrict DAA access for some patients, although treatment would be medically beneficial for those patients. Would such forms of rationing present a form of genetic discrimination? And what of the public health implications of these approaches? Here we present an ethical analysis of such proposals for “precision rationing” and raise 4 key areas of concern. We argue that ethical issues arising in this area are not substantively different from the pressing ethical issues regarding rationing and discrimination more broadly, but provide important impetus for motivating broad public debate to find ethically sound ways of managing genomics and new expensive medications.

中文翻译：

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精准配给的伦理：人类遗传学和对药物获取分层辩论的必要性


新型变革性疗法的价格上涨正在给世界各地的卫生系统带来挑战，导致许多支付者和提供者开始对治疗进行配给，即使是在最抵制这样做的国家也是如此。用于治疗丙型肝炎病毒（HCV）的直接作用抗病毒药物（DAA）就是这种情况。然而，很少有人关注人类遗传学在配给决策中可能发挥的日益重要的作用。研究人员已经提出，与自发 HCV 清除相关的遗传标记可用于限制某些患者使用 DAA，尽管治疗对这些患者来说在医学上是有益的。这种配给形式是否会构成一种基因歧视？这些方法对公共卫生有何影响？在这里，我们对此类“精准配给”提案进行了伦理分析，并提出了 4 个值得关注的关键领域。我们认为，这一领域出现的伦理问题与更广泛的配给和歧视方面的紧迫伦理问题没有本质上的不同，但为激发广泛的公众辩论提供了重要动力，以找到管理基因组学和新的昂贵药物的伦理上合理的方法。