Publications by authors named "Susan H Curtis"
Article Synopsis
- The study explores how biobank participants understand pharmacogenomic (PGx) results, specifically regarding drug-gene interactions that affect their health.
- Conducted through focus groups, the research reveals participants' themes around health implications, drugs, and genetics, indicating they generally grasp their PGx results.
- Findings suggest the need for improved communication strategies in PGx disclosure, recognizing participants' understanding while addressing misunderstandings about drug interactions and genetics.
Article Synopsis
- Genomic sequencing is increasing, making it hard to offer genetic counseling to everyone, so a hybrid approach of in-person communication for actionable results and mail for other results is being explored.
- In a study, participants who received neutral genomic screening results by mail reported high satisfaction and generally understood their results, though a few had misunderstandings about their disease risk.
- The study found that receiving neutral results by mail did not lead to distress or negative health behavior changes, but some individuals may still benefit from extra genetic counseling for context regarding their results.
Article Synopsis
- The study aimed to investigate how returning unexpected pharmacogenomic (PGx) results affects biobank participants and their perspectives on improving communication about these results.
- Researchers conducted focus groups with 54 biobank participants who received unexpected notifications about increased risks related to the cancer drug 5-fluorouracil.
- Findings revealed participants had questions about sharing the information, valued the results personally and for future medicine, and their understanding of risk was influenced by their health identity and experiences with others' chemotherapy reactions.*
Introduction: To address ethical concerns about the of future research authorization, biobanks employing a broad model of consent can design ongoing communication with contributors. Notifying contributors at the time of sample distribution provides one form of communication to supplement broad consent. However, little is known about how community-informed governance might anticipate contributor responses and inform communication efforts.
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