Matthes Nina, Willem Theresa, Buyx Alena, Zimmermann Bettina M
Institute of History and Ethics in Medicine, TUM School of Medicine and Health, Technical University of Munich, Ismaningerstr. 22, Munich, 81675, Germany, 49 89 4140 4041.
Institute of Molecular Immunology, Klinikum Rechts der Isar, TUM School of Medicine and Health, Technical University of Munich, Munich, Germany.
JMIR Hum Factors. 2024 Dec 30;11:e52448. doi: 10.2196/52448.
More clinical studies use social media to increase recruitment accrual. However, empirical analyses focusing on the ethical aspects pertinent when targeting patients with vulnerable characteristics are lacking.
This study aims to explore expert and patient perspectives on vulnerability in the context of social media recruitment and seeks to explore how social media can reduce or amplify vulnerabilities.
As part of an international consortium that tests a therapeutic vaccine against hepatitis B (TherVacB), we conducted 30 qualitative interviews with multidisciplinary experts in social media recruitment (from the fields of clinical research, public relations, psychology, ethics, philosophy, law, and social sciences) about the ethical, legal, and social challenges of social media recruitment. We triangulated the expert assessments with the perceptions of 6 patients with hepatitis B regarding social media usage and attitudes relative to their diagnosis.
Experts perceived social media recruitment as beneficial for reaching hard-to-reach populations and preserving patient privacy. Features that may aggravate existing vulnerabilities are the acontextual point of contact, potential breaches of user privacy, biased algorithms disproportionately affecting disadvantaged groups, and technological barriers such as insufficient digital literacy skills and restricted access to relevant technology. We also report several practical recommendations from experts to navigate these triggering effects of social media recruitment, including transparent communication, addressing algorithm bias, privacy education, and multichannel recruitment.
Using social media for clinical study recruitment can mitigate and aggravate potential study participants' vulnerabilities. Researchers should anticipate and address the outlined triggering effects within this study's design and proactively define strategies to overcome them. We suggest practical recommendations to achieve this.
越来越多的临床研究利用社交媒体来增加招募人数。然而，缺乏针对以具有易受伤害特征的患者为目标时相关伦理方面的实证分析。
本研究旨在探讨专家和患者对于社交媒体招募背景下易受伤害性的看法，并探索社交媒体如何减少或放大易受伤害性。
作为一个测试乙型肝炎治疗性疫苗（TherVacB）的国际联盟的一部分，我们对社交媒体招募方面的多学科专家（来自临床研究、公共关系、心理学、伦理学、哲学、法律和社会科学领域）进行了30次定性访谈，内容涉及社交媒体招募的伦理、法律和社会挑战。我们将专家评估与6名乙型肝炎患者对社交媒体使用情况以及与他们诊断相关态度的看法进行了三角互证。
专家们认为社交媒体招募有利于接触难以触及的人群并保护患者隐私。可能加剧现有易受伤害性的特征包括脱离背景的接触点、对用户隐私的潜在侵犯、不成比例地影响弱势群体的有偏见算法，以及诸如数字素养技能不足和获取相关技术受限等技术障碍。我们还报告了专家提出的几项实用建议，以应对社交媒体招募的这些触发效应，包括透明沟通、解决算法偏见、隐私教育和多渠道招募。
利用社交媒体进行临床研究招募可能减轻也可能加剧潜在研究参与者的易受伤害性。研究人员应在本研究设计中预见并应对上述触发效应，并积极制定克服这些效应的策略。我们为此提出了实用建议。
