Institute of History and Ethics in Medicine, Technical University of Munich, Munich, Germany.
J Eur Acad Dermatol Venereol. 2022 Aug;36(8):1201-1213. doi: 10.1111/jdv.18128. Epub 2022 Apr 20.
Biomarker research is associated with high hopes for atopic dermatitis and psoriasis research. Although various effective treatments have been developed, many challenges remain concerning diagnostics and the development of targeted treatments, but also regarding a number of ethical and social issues. In this paper, building on a systematic literature review and review of reason, we examine the ethical and social debate on biomarker research for atopic dermatitis and psoriasis. We discuss topics such as risks and benefits of stratification of patient groups, ethical aspects of big data and advanced analytics for biomarker use in atopic dermatitis and psoriasis. Our systematic literature review of reason, based on established methodological standards, includes argument-based ethics publications and scientific literature with implicitly ethically relevant aspects. The first search of biomarker research in dermatology and adjacent fields (e.g., oncology) resulted in a large amount of literature concerning general normative aspects of biomarker research, but suggested a lack of explicit argument-based ethical literature in atopic dermatitis and psoriasis research. We, therefore, conducted a second systematic search, focusing specifically on atopic dermatitis and psoriasis biomarker research. The 43 relevant articles identified through both systematic searches were clustered into three topic groups: (i) ethical aspects of stratification and precision medicine, (ii) digital ethics and (iii) research ethics with a focus on complexity and validation. We found that compared to other fields, such as cancer research, the ethical aspects of atopic dermatitis and psoriasis are rarely explained and addressed in detail. In particular, more work is required on scientific standards, digital ethics and responsible clinical application of biomarkers for atopic dermatitis and psoriasis, patient participation and ethical implications of biomarker use for children or young people with atopic dermatitis and psoriasis. We close with suggestions on how to address the ethical and social dimension of atopic dermatitis and psoriasis research and practice more directly in future.
生物标志物研究与特应性皮炎和银屑病研究的高度期望相关联。尽管已经开发出各种有效治疗方法,但在诊断和靶向治疗的发展方面仍然存在许多挑战,还涉及一些伦理和社会问题。在本文中,我们基于系统文献综述和原因审查,研究了特应性皮炎和银屑病生物标志物研究中的伦理和社会争议。我们讨论了诸如患者群体分层的风险和益处、大数据和高级分析在特应性皮炎和银屑病生物标志物中的应用的伦理方面等主题。我们基于既定方法学标准的系统文献综述,包括基于论证的伦理学出版物和具有隐含伦理相关方面的科学文献。对皮肤病学和相邻领域(例如肿瘤学)中生物标志物研究的首次搜索产生了大量涉及生物标志物研究一般规范性方面的文献,但表明特应性皮炎和银屑病研究中缺乏明确的基于论证的伦理学文献。因此,我们进行了第二次系统搜索,专门针对特应性皮炎和银屑病生物标志物研究。通过两次系统搜索确定的 43 篇相关文章被分为三个主题组:(i)分层和精准医学的伦理方面,(ii)数字伦理和(iii)以复杂性和验证为重点的研究伦理。我们发现,与癌症研究等其他领域相比,特应性皮炎和银屑病的伦理方面很少被解释和详细讨论。特别是,需要在科学标准、数字伦理和特应性皮炎和银屑病生物标志物的负责任临床应用、患者参与以及特应性皮炎和银屑病儿童或年轻人生物标志物使用的伦理影响等方面开展更多工作。最后,我们提出了如何在未来更直接地解决特应性皮炎和银屑病研究和实践中的伦理和社会维度的建议。