Presented By:

Richard Sharp _1,2 Allison Glinka _1, Janelle Highland _1, Michelle McGowan _3, Amy Shealy _2, Rocio Moran ₂

1ClevelandClinic Department of Bioethics,Cleveland,OH,USA

2ClevelandClinic Genomic Medicine Institute,Cleveland,OH,USA

3 Case Western Reserve University Department of Bioethics,Cleveland,OH,USA

Abstract

 Recent advances in array-based genomic diagnostics will soon make high-throughput genotyping more readily available to patients and clinicians. With this technological capacity, little is known about patient and provider expectations. Ethical questions that may arise are: What types of information on risks and benefits will patients want to know prior to making a decision about genomic testing? What level of confidentiality do patients expect surrounding these types of results? How do patients plan to utilize genomic risk profile results? This presentation explores these questions through 51 semi-structured interviews with patients at the Cleveland Clinic’s Genomics Medicine Institute. Our findings reveal that patients stressed the importance of discussion with health care providers prior to ordering genomic testing, despite potential clinical time constraints. They also felt these discussions of risk factors should reflect individual patient preferences. Despite patients’ general enthusiasm for genomic testing and their familiarity with the Genetic Information Nondiscrimination Act, many expressed concerns about privacy and confidentiality, especially with respect to inappropriate use of genomic test results by insurance companies and employers. Patients expressed less concerned about absolute confidentiality, stressing the importance of making genetic risk information available to family members. These findings have implications for our current patient-genetic health care provider model, suggesting a new paradigm which might address future roles for genetic counselors, changes in genetics education, the management of vast amounts of information from genomic testing results, and the potential strain between patients and providers with respect to their views on personally relevant and clinically actionable results.