Incidental Finding Preferences in Whole Genome Sequencing: A Randomized Trial

Brigham And Women'S Hospital, Boston MA

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Abstract

DESCRIPTION (provided by applicant): 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.