Laboratory of Neglected Human Genetics (NHG), CNRGH-CEA, Evry, France.
Centre National de Recherche en Génomique Humaine (CNRGH), Direction de la recherche fondamentale, CEA, Institut de biologie François Jacob, Université Paris Saclay, Evry, France.
Sci Eng Ethics. 2019 Oct;25(5):1597-1602. doi: 10.1007/s11948-019-00085-4. Epub 2019 Mar 12.
Networks for the exchange and/or sharing of genetic data are developing in many countries. We focus here on the situations in the US and France. We highlight some recent and remarkable differences between these two countries concerning the mode of access to, and the storage and use of genetic data, particularly as concerns two-sided markets and dynamic consent or dynamic electronic informed consent (e-IC). This brief overview suggests that, even though the organization and function of these two-sided markets remain open to criticism, dynamic e-IC should be more widely used, especially in France, if only to determine its real effectiveness.
网络在许多国家都在发展，用于基因数据的交流和/或共享。我们在这里重点关注美国和法国的情况。我们强调了这两个国家在获取基因数据的方式以及存储和使用方面的一些最近的显著差异，特别是在双边市场和动态同意或动态电子知情同意（e-IC）方面。简要概述表明，即使这些双边市场的组织和功能仍存在争议，但动态 e-IC 应该得到更广泛的应用，尤其是在法国，如果只是为了确定其实际效果的话。
