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

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