Patients' views on HCC biospecimen research: Understanding the role of race and culture through interviews.
Patients' views on HCC biospecimen research: Understanding the role of race and culture through interviews.
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DOI：
10.1097/hc9.0000000000000162
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发表时间：
2023-06-01
影响因子：
5.1
通讯作者：
中科院分区：
文献类型：
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作者：
HCC是癌症相关死亡率的主要原因; HCC风险和生存率存在显著的种族和民族差异。我们的知识分子和遗传因素是否有助于这些观察到的差异是有限的生物标本，这是特别稀缺的少数民族。由于HCC诊断或治疗不需要生物标本，因此患者不太可能仅出于研究目的提供生物标本。我们从一项正在进行的前瞻性队列研究中确定了32名参与者。使用半结构化访谈，我们研究了提供生物标本的研究，以确定激励和阻碍他们的捐赠意愿的因素的看法。定向内容分析产生了6个主题，包括报告的经历（1）支持或怀疑捐赠生物标本;（2）帮助他人或自己的愿望;（3）不便，不适，以及对隐私或恢复的担忧作为捐赠的障碍;（4）对卫生保健研究人员的建议;（5）对生物标本捐赠的偏好;（6）种族、文化和宗教对捐献生物标本的影响。患者报告说，他们最不愿意捐献需要更多侵入性手术和恢复的标本，即肝组织。患者报告说，如果数据收集方便，从丢弃的组织中产生，或作为广泛选择同意方法的一部分，并保证保密性和亲社会效益，则更有可能捐赠。对于种族和文化是否会影响人们捐赠生物标本的意愿，与会者表达了不同的观点。增加捐赠可能性的具体建议包括为患者提供教育材料，说明捐赠的好处以及对保密性和数据使用的担忧，使捐赠方便，并采取广泛的同意生物银行政策。
HCC is a leading cause of cancer-related mortality; there are significant racial and ethnic disparities in HCC risk and survival. Our knowledge regarding whether molecular and genetic factors contribute to these observed differences is limited by scarcity of biospecimens, which are especially scarce in minority populations. Because biospecimens are not needed for HCC diagnosis or treatment, patients are less likely to provide biospecimens solely for research purposes. We identified participants, n = 32, from an ongoing prospective cohort study. Using semi-structured interviews, we examined perceptions of providing biospecimens for research to identify factors that motivate and hinder their willingness to donate. Directed content analysis resulted in 6 themes, including reported experiences of (1) support or suspicion in donating biospecimens; (2) desire to help others or themselves; (3) inconvenience, discomfort, and concerns about privacy or recovery as hindrances to donating; (4) recommendations for health care researchers; (5) preferences for biospecimen donation; and (6) the influence of race, culture, and religion in donating biospecimens. Patients reported being least willing to donate specimens that required more invasive procedures and recovery, namely, liver tissue. Patients reported being more likely to donate if the data collection was convenient, resulted from discarded tissue, or was instituted as part of a broad opt-in consent approach, with assurances as to confidentiality and prosocial benefit. Participants expressed mixed views about whether race and culture influence people’s willingness to donate biospecimens. Specific recommendations to increase the likelihood of donation include providing patients with educational materials addressing the benefits of donation and the concerns about confidentiality and data usage, making donation convenient, and adopting a broad consent bio-banking policy.