在分子HIV监测中获得同意? : 关键利益相关者的观点
Stephen Molldrem1, Anthony K J Smith2, Vishnu Subrahmanyam1
1Institute for Bioethics and Health Humanities, The University of Texas Medical Branch, Galveston, TX, USA.
AJOB empirical bioethics
|September 28, 2023
概括
关键利益相关者通常希望同意分子HIV监测 (MHS) 和集群检测和响应 (CDR) 计划. 虽然具体情况仍在争论中,但向艾滋病毒感染者提供有关监测和预防数据使用的信息是关键的伦理问题.
科学领域:
- 公共卫生道德 公共卫生道德
- 流行病学 流行病学
- 生物伦理学生物伦理学
背景情况:
- 分子艾滋病毒监测 (MHS) 和集群检测和响应 (CDR) 计划是美国艾滋病毒战略的核心,但也引起了争议.
- 对于使用艾滋病毒遗传序列数据用于预防的伦理影响存在担忧,可能超出传统的公共卫生框架.
- 在监测中使用例行收集的临床艾滋病毒数据往往绕过个人同意,优先考虑公共利益.
研究的目的:
- 探索关键利益相关者对MHS/CDR计划中的同意的观点.
- 了解关于实施同意机制和向个人提供有关数据使用的信息的不同观点.
- 在艾滋病毒预防和监测的背景下,检查围绕MHS/CDR的伦理考虑.
主要方法:
- 定性研究涉及采访26位美国艾滋病毒利益相关者,他们对MHS/CDR持批评态度或关注态度.
- 参与者包括来自艾滋病毒感染者网络,倡导者,学者和公共卫生专业人员的个人.
- 分析重点关注有关同意,选择退出,数据透明度和道德问题的利益相关者的立场.
主要成果:
- 在关键利益相关者中,观察到广泛支持将某种形式的同意纳入MHS/CDR.
- 同意实施的具体情况各不相同,一些参与者不支持同意支付.
- 所有受访的利益相关者都同意,让艾滋病毒感染者了解艾滋病毒监测,预防工作和数据利用的重要性.
结论:
- MHS/CDR仍然是艾滋病毒社区内引发重大争议的主题.
- 虽然关键利益相关者通常希望获得同意,但其实施仍然是一个有争议的问题.
- 关于艾滋病毒感染者的权利,有一个强烈的共识,即了解他们的数据如何在公共卫生倡议中使用.
- 公共卫生机构应该重新评估MHS/CDR的伦理框架,考虑到大数据和常规基因序列数据使用的同意过程.
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