Privacy and Progress

User Guide for Science Educators

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has developed educational materials for use in traditional and nontraditional educational settings.

The purpose of this guide is to highlight the most relevant materials for science educators at the undergraduate and high school levels to illustrate how they might be integrated into science courses. This list is not exhaustive; rather, it is meant to serve as a quick reference to some of the most relevant materials.

Privacy in Privacy and Progress in Whole Genome Sequencing

Learning Objectives

Students should be able to:

1. Describe the privacy concerns related to whole genome sequencing.

2. Describe the ethical principles involved in reconciling privacy and progress in whole genome sequencing.

3. Describe the legal and policy considerations associated with protecting the privacy of individuals who contribute whole genome sequencing data and information.

 

Download module here.

Community Engagement in Privacy and Progress in Whole Genome Sequencing

Learning Objectives

Students should be able to:

1. Describe the importance of engaging communities in the sharing of whole genome sequence data.

2. Explain how community engagement helps advance the ethical principles articulated in Privacy and Progress.

3. Identify ways in which community engagement might facilitate the recommendations made in Privacy and Progress.

 

Download module here.

Informed Consent in Privacy and Progress in Whole Genome Sequencing

 

 

Learning Objectives

Students should be able to:

1.Describe current informed consent procedures for whole genome sequencing.

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