Anthropology Department, The Pennsylvania State University, State College, PA 16802, USA.
Center for Translational Bioethics and Health Care Policy, Geisinger, Danville, PA 17822, USA.
Am J Hum Genet. 2019 Feb 7;104(2):197-202. doi: 10.1016/j.ajhg.2019.01.001.
Personalized genetic information is not widely utilized as a resource in learning environments, in part because of concerns about data privacy and the treatment of sensitive personal information. Here we describe the implementation of a curriculum centered on analyzing personalized genetic-ancestry test results during two-week science summer camps for middle-school-aged youth. Our research focused on how the examination of personalized DNA results affected learners' subsequent perceptions and performance, as measured by in-camp pre- and post-tests and surveys, analysis of voluntary student talk captured by audio and video recordings, and periodic one-on-one post-camp follow-ups. The curriculum was grounded in Next Generation Science Standards (NGSS) and focused around the central question of "Who am I?" Campers approached this question via guided lessons designed to shed light on their genetic uniqueness, the many attributes of their genotype and phenotype shared with others, their more distant genetic and evolutionary ancestries, and their roles as active agents in the healthy continuation of their lives. Data relevant to these questions came from edited subsets of ancestry-informative single-nucleotide polymorphisms (SNPs) and phenotype-related SNPs from the campers' genotype results, which their parents had received from a direct-to-consumer vendor. Our approaches to data privacy and the discovery, disclosure, and discussion of sensitive information on paternity, carrier status, and ancestry can be usefully applied and modified for many educational contexts. On the basis of our pilot implementations, we recommend additional and expanded research on how to incorporate personalized genetic ancestry information in a variety of learning contexts.
个性化基因信息尚未广泛应用于学习环境，部分原因是对数据隐私和敏感个人信息处理的担忧。在这里，我们描述了在面向中学生的为期两周的暑期科学营中，分析个性化基因血统测试结果的课程实施情况。我们的研究重点是，通过营地内的前后测和调查、音频和视频记录中捕捉到的学生自愿谈话的分析，以及定期的营地后一对一跟进，来考察对个性化 DNA 结果的分析如何影响学习者的后续认知和表现。该课程以下一代科学标准（NGSS）为基础，围绕“我是谁？”这一核心问题展开。营员们通过有指导的课程来探讨这个问题，这些课程旨在揭示他们的基因独特性、与他人共享的许多基因型和表型特征、更远的遗传和进化祖先，以及他们作为积极参与自身健康延续的角色。与这些问题相关的数据来自营员基因型结果中经过编辑的、具有血统信息的单核苷酸多态性（SNP）子集，以及与表型相关的 SNP，这些数据来自他们的父母从直接面向消费者的供应商那里获得的结果。我们在数据隐私方面的方法，以及发现、披露和讨论亲子关系、携带者状态和祖先等敏感信息的方法，可以在许多教育环境中得到有效应用和修改。基于我们的试点实施情况，我们建议进一步扩大研究，探讨如何在各种学习环境中纳入个性化的基因遗传信息。
