Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School, Cambridge, MA, USA.
Department of Health Sciences and Technology, ETH Zurich, Zurich, Switzerland.
Nat Med. 2019 Aug;25(8):1198-1204. doi: 10.1038/s41591-019-0534-z. Epub 2019 Aug 6.
While genetic testing may be the gateway to the future of medicine, it also poses challenges for individuals, especially in terms of differentiated treatments on the basis of their genetic characteristics. The fear of unwanted disclosure to insurers and the possibility of genetic discrimination can hamper the recruitment of individuals for clinical research that involves genetic testing. Precision medicine initiatives, such as All of Us, are proliferating in the United States. In order to succeed, however, they must ensure that the millions of Americans recruited to share their genetic data are not penalized with regard to life, disability and long-term insurance coverage. In this Perspective, we discuss several initiatives adopted by countries around the world, such as the United Kingdom and France, that better balance the interests of insurers and research subjects, and explain how the United States might learn from them. We call for regulatory and industry leadership to come together to establish a voluntary moratorium on insurance pricing with the aim of protecting research participants.
虽然基因检测可能是医学未来的大门，但它也给个人带来了挑战，尤其是在基于遗传特征的差异化治疗方面。担心向保险公司披露不必要的信息，以及可能存在基因歧视，可能会阻碍涉及基因检测的临床研究招募个人。在美国，像“所有人”这样的精准医学计划正在激增。然而，为了取得成功，它们必须确保招募数以百万计的美国人来分享他们的基因数据，不会在生命、残疾和长期保险覆盖方面受到惩罚。在这篇观点文章中，我们讨论了世界各地的一些国家采取的几项举措，例如英国和法国，这些举措更好地平衡了保险公司和研究对象的利益，并解释了美国可以从中吸取哪些经验。我们呼吁监管机构和行业领导者共同努力，建立一个自愿的保险定价暂停，以保护研究参与者。
