Consequences of Genetic Testing for Adult-Onset Diseases
In the news
Technology that allows you to be tested to assess your genetic predisposition for an adult-onset disease Would you want to know when and how you were probably going to die? What is there is no current treatment? What if you could pass your genetic risk on to your children? Who else (if anyone) would you want to know about your genetic test results?
Objectives Outline major consumer/family issues related to genetic susceptibility and testing for adult-onset diseases Describe some general findings related to two studies (one done at the UofU)
Human Genome Project Mapping the entire human genome Establishment of the National Center for Human Genome Research (NCHGR) Publicity of Disease-Related Genes The “Social Conscience of NCHGR” – ELSI Ethical, Legal, and Social Implications of Genetic Testing
Selected Diseases for Which Genetic Tests Currently Exist Huntington Disease Familial Hypercholesterolemia Sickle-Cell Trait Familial Melanoma Colon Cancer Breast Cancer (BRCA1 & BRCA2) Alzheimer’s (APOE4)
Who should undergo testing? Predictive gene testing Healthy persons in at-risk families Depends on the disease Depends on the gene mutation Depends on the person
Who would undergo predictive testing? TIME/CNN Poll – 50% would take a predictive test. Utah Poll – If a treatable disease (colon cancer), increases to 80%. High Risk Families – if given information about testing, 50-60% are tested.
Why are people concerned about testing and test results? Screening Behaviors Psychological and emotional worries Effects on relationships and family Effects on privacy and insurance/employer discrimination
Reviewing Genetic testing for adult onset diseases is a relatively new technology Sparked by the Human Genome Project Social science research supported by ELSI Range of serious adult-onset diseases that can now be tested for Raises numerous questions about how people process this information and the consequences for individual and family well-being