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1Module 4Weighing Benefits and Harms:Ethical Issues in Genetic Testing2Four Key Questionsto AlwaysAsk Yourself• What is the ethical question?• What are the relevant facts?• Who or what could be affected by the way thequestion gets resolved?• What are the relevant ethical considerations?See theIntroductionFor more information about thefour key questions, see theIntroduction, page 5.3Ethical Considerations Relevant to This Module*Respect for Persons• How can genetic tests be done in a waythat is respectful of the individualbeing tested?• Under what circumstances should theresults of a genetic test be shared withothers? Under what circumstancesshould the results of a genetic test bekept confidential?See Module 1Students are introduced to thefour key questions and ethicalconsiderations in Module 1.Modules 2–6 assume this priorknowledge. We strongly recommendthat you complete Module 1first with your students, beforestarting any of the other modules.4Harms and BenefitsFairness• What harms and benefits do genetic testsbring to the individual being tested and hisor her family members?• Should all people have equal access togenetic tests?• Should all people have equal access to theappropriate medical interventions to managethe results of genetic tests?5*Bold items are emphasized in this module.4-16
Issues Explored• What are the potential harms and benefits of getting genetically tested?• Who should get to decide whether an adolescent will get genetically tested?• How do factors such as age at disease onset, the predictive value of the test,and whether there is effective medical therapy for the condition affect howmuch decision-making power an adolescent should have for a genetic test?• How can genetic testing be done so that the confidentiality of an individual’spersonal medical information is protected?At a GlancePurpose and RationaleAs scientists discover more and more about human genetics, individuals and theirfamily members will have more opportunities to have genetic testing. It is criticalthat everyone involved understand the difference between inherited and somaticgenetic mutations and be able to successfully interpret the meaning of mutationsdeemed to be genetic risk factors. Because genetic testing has the potential tobring benefits and harms, patients, families, and policy makers will face difficultchoices about how and when to get tested and how to use the results.OverviewIn Module 4, students use a range of examples and case studies involvinggenetic tests. These examples and case studies serve to help students understandthe range of available genetic tests, as well as grapple with how best torespect persons while simultaneously minimizing harms and maximizingbenefits. How do diseases like Alzheimer’s disease and particular cancers comparewith one another, and what information can (or cannot) be learned fromassociated genetic tests? Is more information always desirable, or better? Whoshould decide whether a person should have a genetic test? Should a teenagerbe forced to have a genetic test whose results he or she doesn’t want, even ifthey could pave the way for preventive treatment?Over the course of much of this module, students explore a case in which thereis a conflict between a father and his adolescent son over whether the sonshould be tested for a particular genetic mutation. If a person has the mutation,the chance is 100 percent that he or she will develop a form of thyroid cancerthat will be fatal if left untreated. This form of thyroid cancer arises during a person’sadolescence, 20s, or 30s. Students attempt to understand how the fatherand the son might think about this choice. Ultimately, each student must stateand justify who the final decision maker should be.4-2 Exploring Bioethics
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NIH CurriculumSupplement SeriesGrad
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Education Development Center, Inc.D
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This material is based on work supp
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About the National Institutes of He
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Introduction
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activity of assessing different rea
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teaching strategies that will help
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2. The ability to distinguish an et
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quence of choosing one path over an
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Table 1. Assessing Student Justific
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Challenges in TeachingBioethics and
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How Exploring Bioethics Can HelpFor
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Prompts to encourage students to re
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Table 2d. Students say they already
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Resources forTeaching BioethicsBeau
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Table 3. Ethical Issues and Curricu
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Each module is divided into three d
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Table 4. Alignment with NSES Life S
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About the Web SiteThe Web site for
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1Module 1Bioethics Concepts and Ski
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• apply important ethical conside
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In Advance1Copies, Equipment, and M
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Teaching Sequence1Day 1: What’s i
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new medication, she is able to stay
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6. Read the list of Round 1 questio
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• With respect to performance enh
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LE/LE/LLE/LPoint out that some of t
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Organizer for Day 1: What’s in a
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Day 2: Four Key Questions1PurposeDa
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4. Emphasize that when bioethicists
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15. Ask students to list as many et
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Organizer for Day 2: Four Key Quest
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Encourage students to share example
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Activity 7:Using Ethical Considerat
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4. Ask a representative from each g
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Organizer for Day 3: Core Ethical C
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References and Resources1Informatio
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What Type of Question? ROUND 1—Et
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What Type of Question? ROUND 3: Eth
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Round 4Q9Should embryonic stem cell
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Oscar Pistorius—The Fastest Man w
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Four Key Questions and Statementof
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Carl’s CaseCarl listened to his t
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1Module 2Balancing Individual and C
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adopting vaccination policies that
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In Advance1Copies, Equipment, and M
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Teaching Sequence1Day 1: Exploring
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the key stakeholders, and taken int
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You may wish to highlight the dange
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ClosureAsk students to reflect on t
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Day 2: Community Immunity1PurposeOn
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10. Ask all students in the class t
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• While an unvaccinated person’
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ClosureRecap for students that the
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Tell only the students who were tag
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5. Divide students into pairs, and
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17. Share with students that becaus
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13. Note that the Boston and Dublin
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Teaching StrategiesYou may want to
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Ask each member of the pair to read
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1Centers for Disease Control and Pr
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Get Kids Vaccinated or ElseGet Kids
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Name(s)Station 2—Vaccine RisksDir
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Station 1: Vaccine-Preventable Dise
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MumpsBefore the mumps vaccine was i
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Station 2—Vaccine RisksNote: Like
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Smallpox VaccineThe smallpox vaccin
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Station 4—ExemptionsExemptions vs
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State Exemptions Allowed as of Fall
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Name(s)What are the ethical conside
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Vaccination Status CardsVaccinated
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Opting Out of a Vaccine—Variables
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Measles in DublinIn 2000, an outbre
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What are some of the different pers
Page 153 and 154: Issues Explored• What is the fair
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Page 173 and 174: Organizer for Day 2: Identifying St
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Page 177 and 178: Activity 9:Understanding Past and C
Page 179 and 180: ClosureReinforce to students that t
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Page 183 and 184: Liver Function and FailureHepatitis
Page 185 and 186: Name(s)Banting decided that he woul
Page 187 and 188: Name(s)The COC distributed the peni
Page 189 and 190: Name(s)The Admissions and Policy Co
Page 191 and 192: Liver and Liver-Transplant Fact She
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Page 195 and 196: Patient ProfilesAnitaAnita is a 19-
Page 197 and 198: Additional Patient InformationAnita
Page 199 and 200: The United Network for Organ Sharin
Page 201 and 202: Comparing the Past and Current UNOS
Page 206 and 207: An optional extension activity incl
Page 208 and 209: In Advance1Preparing the Envelopes
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Page 218 and 219: ClosureTo close the class, remind s
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Page 232 and 233: ReflectionDisplay the posters from
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Page 245 and 246: Genetic Testing—Key Concepts• S
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Page 249 and 250: Your Tentative ThoughtsName(s)1. Do
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Extension (Optional)About Retinitis
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Issues Explored• Why is it import
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Key Science Knowledge*• Nature of
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Teaching SequenceDay 1: Research wi
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13. Ask students, “Should I just
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Some students in the treatment grou
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it is ethically acceptable. For exa
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Students should recognize that rese
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ClosureAsk the class whether they t
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Organizer for Day 1: Research with
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Activity 4: Returning to Your Decis
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5. Discuss the results with the who
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5. Summarize two key points about r
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• The Belmont Report has served a
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Organizer for Day 2:Harms and Benef
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Day 3: Analyzing the Willowbrook Ca
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Deciding on and Recording Main Poin
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Organizer for Day 3: Analyzing the
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Willowbrook StudyCenters for Diseas
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Asthma Simulation OutcomesYou were
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Name(s)Reflection Questions1. Aside
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Letter to ParentsThis is the letter
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What Are the Relevant Ethical Consi
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Name(s)(Fill out with your partner.
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Name(s)(Fill out individually.)Your
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Issues Explored• Should there be
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Key Science Knowledge*• DNA, RNA,
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4. Ask students for their prelimina
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8. Tell students to come to the nex
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Day 2: Deepening Your Thinking—So
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You may wish to note that• Cases
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2. Direct students to turn to their
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Organizer for Day 2: Deepening Your
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Day 3: Making a Recommendation—Se
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Those cases where students do not t
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3. Ask a representative from each g
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Activity 9: Returning to Alba’s C
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1Ear MiceBBC News. 2002. Artificial
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Alba’s CaseSince the early 1990s,
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Dyed FeathersPeople dye bird feathe
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Giant Panda BreedingThe giant panda
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Mad-Cow-Disease CowsMad cow disease
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Purebred DogsHumans have geneticall
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Spider-Silk GoatsSpider silk is str
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VealVeal is meat from calves that i
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Assessing Harms, Benefits, and Pote
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Final Assessment of Alba’s CaseRe
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This curriculum supplementwas devel
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