Practical and Ethical Considerations of Using Personal DNA Tests with Middle-School-Aged Learners.
Practical and Ethical Considerations of Using Personal DNA Tests with Middle-School-Aged Learners.
复制标题
对中学生进行个人 DNA 测试的实际和道德考虑。
DOI：
10.1016/j.ajhg.2019.01.001
复制
发表时间：
2019
影响因子：
9.8
通讯作者：
Jablonski,NinaG
中科院分区：
文献类型：
--
作者：
Wright,ElizabethA;Wagner,JenniferK;Shriver,MarkD;Fernandez,JoseR;Jablonski,NinaG
个性化遗传信息在学习环境中没有被广泛用作资源，部分原因是担心数据隐私和敏感个人信息的处理。在这里，我们描述了在为期两周的中学生科学夏令营期间，以分析个性化遗传-祖先测试结果为中心的课程的实施。我们的研究集中在对个性化DNA结果的检查如何影响学习者随后的感知和表现，通过夏令营前后的测试和调查、通过音频和视频记录的自愿学生谈话的分析以及定期的一对一夏令营后跟踪来衡量。该课程以下一代科学标准(NGSS)为基础，围绕“我是谁？”这一中心问题展开。露营者通过指导性课程来解决这个问题，这些课程旨在阐明他们的基因独特性，他们与他人分享的基因和表型的许多属性，他们更遥远的遗传和进化祖先，以及他们在健康延续生命中扮演的积极因素的角色。与这些问题相关的数据来自编辑的祖先信息性单核苷酸多态(SNPs)子集和露营者基因结果中与表型相关的SNPs，这些SNPs是他们的父母从直接面向消费者的供应商那里获得的。我们对数据隐私以及关于亲子关系、携带者身份和血统的敏感信息的发现、披露和讨论的方法可以在许多教育背景下有效地应用和修改。在我们的试点实施的基础上，我们建议就如何将个性化的遗传祖先信息纳入各种学习环境进行更多和更广泛的研究。
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.