Earl Jake, Dawson Liza, Rid Annette
Walter Reed Army Institute of Research.
National Institutes of Health.
Am J Bioeth. 2024 Jul 15:1-17. doi: 10.1080/15265161.2024.2371119.
Clinical researchers should help respect the autonomy and promote the well-being of prospective study participants by helping them make voluntary, informed decisions about enrollment. However, participants often exhibit poor understanding of important information about clinical research. Bioethicists have given special attention to "misconceptions" about clinical research that can compromise participants' decision-making, most notably the "therapeutic misconception." These misconceptions typically involve false beliefs about a study's purpose, or risks or potential benefits for participants. In this article, we describe a misconception involving false beliefs about a study's potential benefits for non-participants, or its expected social value. This social value misconception can compromise altruistically motivated participants' decision-making, potentially threatening their autonomy and well-being. We show how the social value misconception raises ethical concerns for inherently low-value research, hyped research, and even ordinary research, and advocate for empirical and normative work to help understand and counteract this misconception's potential negative impacts on participants.
临床研究人员应通过帮助潜在研究参与者做出关于参与研究的自愿、知情决定,来尊重他们的自主权并促进其福祉。然而,参与者对临床研究的重要信息往往理解不足。生物伦理学家特别关注那些可能影响参与者决策的关于临床研究的“误解”,最显著的是“治疗性误解”。这些误解通常涉及对研究目的、参与者风险或潜在益处的错误认知。在本文中,我们描述了一种误解,即对研究给非参与者带来的潜在益处或其预期社会价值存在错误认知。这种社会价值误解可能会影响出于利他动机的参与者的决策,潜在地威胁到他们的自主权和福祉。我们展示了社会价值误解如何引发对本质上低价值研究、炒作性研究甚至普通研究的伦理关注,并倡导开展实证和规范性工作,以帮助理解并抵消这种误解对参与者可能产生的负面影响。