Exploring Bioethics - NIH Office of Science Education - National ...

Activity 5:Who or What Will Be Affected by How theSituation Is Resolved?Estimated Time: 20 minutes1Procedure1. Introduce this section by explaining to students that now that theyhave educated themselves about the main scientific and medicalfacts, it is time for them to turn to the key question, Who or whatwill be affected by the way the question gets resolved—in this case,who besides Max stands to be affected by whether Max is tested?2Emphasize that identifying these stakeholders is one importantelement in identifying the potential harms and benefits of the test, aswell as the confidentiality issues.2. Use the overhead projector to display Max’s family pedigree on hismother’s side—Part III of Master 4.3—and distribute one copy ofMaster 4.3 to each student.33. Read Part III aloud and explain the family tree to students.All students should notice the key and note located below the pedigree,as well as Max’s sibling (Sally) and cousin (Lindsey). Students shouldcome to the realization that a positive test result for Max means thatothers in his family might also have inherited the mutation, but anegative test result does not rule out that other family members haveinherited this mutation by other family members. Thus, although Max’stest result does not directly reveal genetic information about othersin the family, multiple people could nevertheless be affected by newgenetic information discovered about Max.4. Remind students that there are many forms of thyroid cancer andthat Nick, Harriet, and James could have died of a form of thyroidcancer unrelated to the one associated with MEN II.MEN II accounts for only a fraction of thyroid cancer cases inthe world, so it is impossible to know from the pedigree whetherNick, Harriet, and James had MEN II. On Day 3, there will bean opportunity to discuss whether Max should share any newlydiscovered genetic information with his family members. If Max wereto test positive, others in the family might want to get their owngenetic testing immediately.Tip from the FieldIf students seem stuck or confused,call their attention to the key andthe note below the pedigree. Makesure that students understand thatshaded individuals have beendiagnosed with thyroid cancer butthat no one in the family has beentested for this particular mutation.45Module 4 4-196