Incidental Finding Preferences in Whole Genome Sequencing: A Randomized Trial

描述（由申请人提供）：全基因组测序（WGS）即将纳入临床护理，这凸显了如何将结果传达给患者缺乏共识。特别是，WGS将产生令人难以置信的大量关于疾病易感性的信息，这些信息已被证明是有效的，但缺乏改变临床预防或治疗建议的能力。对披露这些信息的最大担忧之一是，它可能会促使患者要求不必要的后续服务，并导致有限的医疗资源被过度使用。然而，这些信息可能对患者有重要的个人意义，患者可能会觉得有权获得这些信息，如果这些信息被删除，他们会感到不满。本研究拟通过向合作伙伴医疗系统的患者提供不同的假设WGS结果，以提高我们对不同的WGS风险信息披露策略对患者满意度和随访信息寻求的影响的理解，特别是对临床服务的影响。250名参与者将被随机分为三个假想的披露组：(1)“不披露”组，参与者只被告知测序没有识别出需要立即临床反应的信息；(2)“完全披露”组，参与者将收到大量临床实用性有限的风险信息；或(3)“患者偏好”组，参与者将表明他们希望接收哪种风险信息，并相应地提供信息。然后，他们将被问及寻求后续临床服务的可能性，并跟踪在线信息寻求行为。此外，满意度约

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. 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.