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									Ethics in the Science Classroom 2006
Lesson Idea and Action Plan

Lesson Title

I’m just a bill: National Mandatory Genetic Screening of Newborns

Name(s)
Lynetta Binger



Summary
Short 2-3 sentence summary of your lesson idea, used to describe it on our website

Students play the role of stakeholders in a congressional hearing in preparation to debate the merits of a bill mandating
national genetic screening of newborns.

Course(s) for which lesson is intended, including grade level and subject area(s)
Biology, Bioethics, Biotechnology
Grades 9-12



Standards addressed (State and/or National)




Where in your curriculum will this lesson fit?
After a unit on the Human Genome Project in an elective course entitled Biotechnology and Bioethics



What is the science topic/content?

Genetic disorders: cell biology and physiology of their syndromes and treatments, genetics of their inheritance

Describe the lesson strategy or strategies you will use. What will students do?
Will you use a case study, news article, movie, etc.?
Will you use stakeholder groups? Structured academic controversy?

Stakeholder groups will present statements at a congressional hearing. A mock debate of a proposed, fictitious, bill will be
used to further analyze the issue of mandatory genetic screening.

How will you assess student understanding?

Participation as stakeholders and Senators; written position paper justifying vote on bill
                I’m Just a Bill: National Mandatory Genetic Screening of Newborns
                                               By Lynetta Binger
                                              The Madeira School
                                                 McLean, VA
Summary
         Should a bill mandating nationwide genetic screening of newborns be passed? If so, what criteria should
be used to choose the disorders? Who pays for screening and subsequent treatment of disorders? These are just
a few of the many questions that this unit can be used to address with students. These lessons, which use a
congressional hearing model and culminate in voting on a bill, will help students analyze the complex issues
that arise surrounding genetic screening of newborns for disorders. Students will play the role of a particular
stakeholder in a congressional hearing about the general issue of newborn screening. On a following day,
students take on the role of Senators and debate a bill mandating national screening of newborns in the United
States. The lesson concludes with a vote on the bill as amended during debate. Assessment of student
understanding is based on a position paper they write that reflects their justification for how they voted and may
include a proposal for an improved bill.

Basic Plan
    Introduce topic of genetic disorders and screening. Spend as much time as needed to review/cover topics
       listed below as background.
            o Use an envelope activity where students are the recipients of the results of a genetic screen. See
               for example: http://onlineethics.org/edu/precol/classroom/lesson15.html
            o Assign each student a disorder, state law, or country’s policy about which they must report to the
               class.

      Introduce activities (Congressional Hearing and Senate Debate)
                   Students will first play the role of stakeholders at a congressional hearing. See An Ethics
                      Primer p.86-89 from http://www.nwabr.org
                   After the hearing (perhaps in another class period), students will take on the role of
                      Senators and debate a bill
                   Students will vote following the debate and amending period.
                   A class discussion is held where students voice their own views.
                   Students write a position paper.

      Introduce the bill
           o The bill should be in language and format typical of actual bills. It should mandate nationwide
              screening of newborns for several disorders in addition to the ones already used by most states.
              The additional disorders should be ones that provoke discussion such as Huntington’s or
              alcoholism. Provocative disorders might have low clinical validity which would mean that a
              positive test would not adequately predict risk for developing the disorder, or might be disorders
              for which there are not effective treatments.

      Plan who needs to come to the hearing; decide on stakeholders using a class brainstorming session.

      Assign individual roles to the students and have each prepare a three minute, oral statement based on
       their point of view as a stakeholder. A small number of students will be assigned the role of a Senator.
       Senators will prepare an opening statement and questions for the stakeholders.

      Have a congressional hearing
          o The Senators make their opening statements about the general issue of genetic screening of
              newborns for disorders. Each stakeholder presents her opening statement to the panel of
              Senators. Senators are responsible for controlling the time allowed for each stakeholder to speak.
              After the opening statements, the Senators run a question and answer period. During this time,
              Senators and stakeholders ask questions of each other.

      Convene as The Senate and consider legislation
          o Teacher will run the session attempting to following Robert’s Rules of Order as close as
             possible. This will allow for one person to have the floor at a time and for amendments to be
             proposed and considered.
          o Debate as Senators
          o Amend
          o Vote

      Have a class discussion of the topic (no roles: students speak as themselves)

      Students write a position paper explaining their reasoning for supporting or opposing passage of the bill.
       They might also use the paper to propose a new bill that addresses concerns they had about the bill voted
       upon by the class.

Background to introduce in advance of the hearing
Much of the information needed for a teacher to successfully prepare to teach this unit can be found at The
University of Utah’s Genetic Science Learning Center’s website
http://learn.genetics.utah.edu/teachers/units/newborn/NGS-student%20packet.pdf
Below is an outline of the topics that would help inform students about genetic screening and prepare them to
engage in a debate over national screening of newborns for disorders.

      Biology
          o Genetic disorders
                Treatment options
                Symptoms/syndrome
                Inheritance patterns/concepts
                        penetrance, multifactorial, dominance, sex linkage
                Frequency in population/subgroups

      Technical
          o Gene mapping/cloning
          o DNA microarrays
          o Collection of sample
          o Test reliability/validity


      History

      Legal and policy
          o Current legislation
          o State survey
          o Global situation
          o Screening versus Testing

Issues that will likely be covered in hearing and/or debate
     What is the cost per test versus cost of treatment?
     Who pays and how?
     Who controls/owns/has access to the results?
      How will the results be used?
      Who benefits?
      What are the risks? Can the information be misused?
      Which disorders are best to screen for?
      What constitutes a disorder?

Ethical issues and perspective that will likely arise
    Autonomy of parents
    Respect for persons
    Outcomes based: cost/benefit analysis
    Care based: social structures

Stakeholders (roles) who could be represented at the hearing
    Doctor
    Parent of newborn
    Parent of child with a disorder
    Interest group (lobbyist) for a disorder
    Lawyer
    Insurance company
    Economist
    Scientific researcher
    Clergywoman
    Ethicist
    Genetic counselor
    Others? Retiree, teacher, teenager, counselor

								
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