Communication Challenges for Nongeneticist Physicians Relaying Clinical Genomic Results

Abstract

Aim: Identify the behavioral challenges to the use of genome sequencing (GS) in a clinical setting. Materials & methods: We observed how general internists and nongenetic specialists delivered GS results to patients enrolled in the MedSeq Project. Using transcripts of such disclosure interactions, we made qualitative observations of communication behaviors that could limit the usefulness of GS results until reaching the point of thematic saturation. Results: Findings included confusion regarding genomic terminology, difficulty with the volume or complexity of information and difficulties communicating complex risk information to patients. We observed a broad dismissal of clinical value of GS by some physicians and sometimes ineffective communication regarding health behavior change. Conclusion: Overcoming these behavioral challenges is necessary to make full use of clinical GS results.

Keywords::

• behavior change
• clinical genomics
• ELSI
• genetic literacy
• physician–patient communication
• qualitative research
• whole genome sequencing

Acknowledgements

The authors thank the staff and participants of the MedSeq Project for their important contributions. The authors thank 5AM Solutions, Inc. (Rockville, MD, USA), for their help in customizing the work flow of the ‘My Family Health Portrait’ web tool for this study.

Financial & competing interests disclosure

The MedSeq Project is carried out as a collaborative study supported by the National Human Genome Research Institute U01-HG006500. Dr. Robert C Green receives compensation for speaking or consultation from AIA, GenePeeks, Helix, Illumina, Ohana, Prudential and Veritas; and is co-founder, advisor and equity holder in Genome Medical, Inc. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Ethical conduct of research

The authors state that they have obtained appropriate institutional review board approval or have followed the principles outlined in the Declaration of Helsinki for all human or animal experimental investigations. In addition, for investigations involving human subjects, informed consent has been obtained from the participants involved.

Additional information

Funding

The MedSeq Project is carried out as a collaborative study supported by the National Human Genome Research Institute U01-HG006500. Dr. Robert C Green receives compensation for speaking or consultation from AIA, GenePeeks, Helix, Illumina, Ohana, Prudential and Veritas; and is co-founder, advisor and equity holder in Genome Medical, Inc. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.