Practical and Ethical Considerations of Using Personal DNA Tests with Middle-School-Aged Learners

Elizabeth A. Wright, Jennifer K. Wagner, Mark Shriver, Jose R. Fernandez, Nina G. Jablonski

Research output: Contribution to journalComment/debate

Abstract

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.

Original languageEnglish (US)
Pages (from-to)197-202
Number of pages6
JournalAmerican Journal of Human Genetics
Volume104
Issue number2
DOIs
StatePublished - Feb 7 2019

Fingerprint

Privacy
Curriculum
Single Nucleotide Polymorphism
Genotype
Learning
Phenotype
Video Recording
Paternity
DNA
Disclosure
Research
Parents
Students
Therapeutics
Surveys and Questionnaires

All Science Journal Classification (ASJC) codes

  • Genetics
  • Genetics(clinical)

Cite this

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title = "Practical and Ethical Considerations of Using Personal DNA Tests with Middle-School-Aged Learners",
abstract = "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.",
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Practical and Ethical Considerations of Using Personal DNA Tests with Middle-School-Aged Learners. / Wright, Elizabeth A.; Wagner, Jennifer K.; Shriver, Mark; Fernandez, Jose R.; Jablonski, Nina G.

In: American Journal of Human Genetics, Vol. 104, No. 2, 07.02.2019, p. 197-202.

Research output: Contribution to journalComment/debate

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