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Clinical providers' experiences with returning results from genomic sequencing: an interview study
Julia Wynn1, Katie Lewis2, Laura M Amendola3
1Department of Pediatrics, Columbia University Medical Center, New York, NY, USA.
BMC Medical Genomics
|May 10, 2018
Summary
Returning genomic sequencing results to patients presents unique challenges, including managing expectations and communicating complex, uncertain findings. Best practices are needed to guide clinicians in this evolving area of medicine.
Area of Science:
- Genomics
- Clinical Genetics
- Bioethics
Background:
- Genomic sequencing (GS) is increasingly used in clinical and research settings.
- The process of disclosing GS results to patients and participants is not well-established.
- There is a need to examine best practices for genomic result disclosure.
Purpose of the Study:
- To explore the experiences of clinicians returning genomic sequencing results.
- To identify challenges and effective strategies in genomic result disclosure.
- To gather recommendations for training and resources for healthcare providers.
Main Methods:
- Conducted semi-structured interviews with 21 clinicians involved in returning GS results.
- Focused on session logistics, participant reactions, and influencing factors.
- Gathered clinician recommendations for resources and training.
Main Results:
- Disclosure sessions varied in length based on result complexity.
- Participant reactions ranged from positive to negative, influenced by expectations and health status.
- Key challenges included managing expectations, communicating uncertainty, and navigating rare diagnoses.
Conclusions:
- Returning genomic results magnifies challenges of traditional genetic testing due to complexity and uncertainty.
- Managing patient expectations is a critical, ongoing issue throughout the genomic testing process.
- Further research and education are needed to prepare providers for genomic result disclosure.