The impending incorporation of whole genome sequencing (WGS) into clinical care highlights the lack of consensus about how to communicate results to patients. In particular, WGS will generate incredible amounts of information about susceptibility to disease that has proven validity, but lacking the power to change clinical recommendations for prevention or treatment. Among the greatest concerns about disclosing this information is its potential to motivate patients to request unnecessary follow-up services and lead to overuse of limited healthcare resources. Yet, the information may have important personal meaning to patients, and patients may feel entitled to it and dissatisfied if it is withhed. The proposed research aims to improve our understanding about the impact of different strategies for disclosing WGS risk information on patient satisfaction and follow-up information seeking, particularly for clinical services, by presenting patients of the Partners HealthCare System different hypothetical WGS results. 250 participants will be randomized into one of three hypothetical disclosures arms: (1) a 'No Disclosure'arm where participants will be informed merely that sequencing identified no information that necessitated an immediate clinical response, (2) a 'Full Disclosure'arm where participants will receive a large array of risk information with limited clinical utility, or (3) a 'Patient Preferences'arm where participants wil indicate what kind of risk information they would want to receive and information is presented accordingly. They will then be queried about their likelihood of seeking follow-up clinical services, and online information seeking behaviors will be tracked. In addition, satisfaction about the process and content of disclosure will be queried after participants are informed about alternative disclosure approaches. Findings from this research will provide critical insight about how WGS information can be disclosed to patients in ways that maximize satisfaction while minimizing unnecessary demands for healthcare.

Public Health Relevance

This study explores how risk information from whole genome sequencing may affect patient demands for additional clinical services by presenting different types of hypothetical disclosure materials to patients of the Partners HealthCare System and asking them to rate the likelihood that they would seek more information. Satisfaction with information and the process of disclosure will also be assessed after presenting alternative disclosure approaches. The findings of this study will provide valuable insight about how strategies that empower patients to decide the content of what's disclosed affects information-seeking relative to strategies that minimize or maximize the amount of information that is communicated.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Postdoctoral Individual National Research Service Award (F32)
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Special Emphasis Panel (ZRG1-F16-B (20))
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Mcewen, Jean
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Brigham and Women's Hospital
United States
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