Who Owns Rights To Pharmacogenetic Information?

Compiled by Susan Musante, AIBS, from an original lesson by Brian Shmaefsky, Lone Star College, Kingwood, TX, published in AIBS's ActionBioscience.org.
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Summary

This lesson guides students to examine the potential benefits, risks, and ethical concerns of designer drugs. Students begin by reading an article titled "Ethical Issues in Pharmacogenetics" by Carol Isaacson Barash, an ActionBioscience.org original article. Next they will read information on the National Human Genome Research Institute on Pharmacogenetics: Frequently Asked Questions about Pharmacogenomics. Instructors can then use the lesson to guide students through shorter activities and/or one main activity. The smaller activities involve students in describing the research behind the issue, making it accessible to a less-informed audience, and in exploring the ethical issues outlined in the article to support various points of view. The larger activity is for upper level students to gather evidence to support particular perspectives so that they can present different views about the ownership of human DNA information.


Learning Goals

Students will...
- develop an understanding of the rationale of ownership over scientific information
- research the commercial applications of DNA sequences
- formulate an opinion about sharing scientific information
- analyze how to evaluate medical ethics issues
- understand the implications of public access to personal DNA information

Context for Use

The activities presented in this example are for high school students through undergraduate college students. The activities can be accomplished through a combination of in-class group work, individual work in-class, or as take-home work with a culminating large class presentation and discussion of the outcomes. It requires students to have access to the online article (or a printed version of it) and access to additional resources and references through the library and/or internet. If those are all available in the classroom, it does not require any outside class time. The shorter activities can take from 1-2 days (article reading, review, discussion, and activity). The longer activity (Handout 2) will take 1-3 days. Students should already have a basic understanding of DNA and genes prior to beginning these activities.

Description and Teaching Materials

The lesson by Shmaefsky provides the teaching materials for this example. It contains instructions and information for completing the activities to engage students in the issues surrounding ethics and pharmacogenetics. The Frequently Asked Questions on Pharmacogenomics is available for free on the NHGRI's website.

Here are two additional scenarios that you could use to guide your students to explore this real-world issue:

Scenario 1: In Class

1. Introduce the issue of pharmacogenetics as a contemporary relevant concern faced by the scientific discipline through the article by Carol Isaacson Barash: ". This issue must be pertinent to the topic covered in that particular session.
2. Then pose a question to the class and ask the students to generate an opinion based upon the article they read. Have the students write down their opinion.
3. Ask the students what else they might need to know to be able to substantiate their opinion. Guide them to understand they will need scientific facts to understand the issue. Provide them with information or make information available to them to answer their questions about the issue.
4. Ask the class to use what they learned in class to discuss in small groups and come up with a view or resolution of the issue.
5. The set of guiding rules (in the How to section of this module) for addressing the issue is presented as a hand-out or projected on a screen.
6. Give students ample time in class to resolve the issue. Periodically ask the students about their progress and whether a resolution is near.
7. Guide a discussion with all students, allowing them to reflect on the issue.

Scenario 2: Take-home Assignment
1. Introduce the issue of pharmacogenetics as a contemporary relevant concern faced by the scientific discipline through the article by Carol Isaacson Barash: "Ethical Issues in Pharmacogenetics". This issue must be pertinent to the topic covered in that particular session.
2. Then pose a question to the class and ask the students to generate an opinion based upon the article they read. Have the students write down their opinion.
3. Ask the students what else they might need to know to be able to substantiate their opinion. Guide them to understand they will need scientific facts to understand the issue. Provide them with information or make information available to them to answer their questions about the issue.
4. Ask the class to use what they learned in class to discuss the issue in small groups.
5. The set of guiding rules (in the How to section of this module) for addressing the issue is provided as a handout.
6. Assign students the task of writing a brief paper detailing their views or resolutions of the issue which they will turn in at the next class period.
7. Guide a discussion with students allowing them to reflect on the issue after their papers are complete and submitted.

Teaching Notes and Tips

There is no one formula for using real-world issues in the classroom. Regardless of which activities or scenario is used, time in class should be made available for the students to reflect upon their resolutions to the issue. During this time, it is recommended that the instructor explain the relationship between the issue and the concepts covered in class. Feedback for the take-home assignment can be presented to the whole class based on a synopsis of the student reports. Any student arguments or disagreements should be directed back to the facts related to the issue. Instructors can share their viewpoints as long as they explain how they use to facts to come up with their view or resolution.

Assessment

Assessing student learning for the activities depends upon the goals instructors have for using the lesson.
For more information on assessment:
  • SERC's On The Cutting Edge: Professional Development for Geosciences Faculty has a terrific suite of resources on assessment. Go to Observing and Assessing Student Learning to learn about the different types of assessment and techniques for finding out what your students are learning as you use new teaching approaches.

References and Resources

"Ethical Issues in Pharmacogenetics" by Carol Isaacson Barash, an ActionBioscience.org original article. A list of references is provided at the end of the article.