Erdmann Anke, Rehmann-Sutter Christoph, Bozzaro Claudia
Institute for Experimental Medicine, Medical Ethics Working Group, Kiel University, 24105 Kiel, Germany.
Institute for History of Medicine and Science Studies, University of Lübeck, 23552 Lübeck, Germany.
J Pers Med. 2022 Apr 3;12(4):574. doi: 10.3390/jpm12040574.
(1) Background: Due to the high burden of diseases with chronic inflammation as an underlying condition, great expectations are placed in the development of precision medicine (PM). Our research explores the benefits and possible risks of this development from the perspective of clinicians and researchers in the field. We have asked these professionals about the current state of their research and their expectations, concerns, values and attitudes regarding PM. (2) Methods: Following a grounded theory approach, we conducted qualitative interviews with 17 clinicians and researchers. For respondent validation, we discussed the findings with the participants in a validation workshop. (3) Results: Professionals expect multiple benefits from PM in chronic inflammation. They provided their concepts of professionals' and patients' work in the development of PM in chronic inflammatory diseases. Ethical, process-related and economic challenges were raised regarding the lack of integration of data from minority groups, the risk of data misuse and discrimination, the potential risk of no therapy being available for small strata, the lack of professional support and political measures in developing a healthy lifestyle, the problem of difficult access to the inflammation clinic for some populations and the difficulty of financing PM for all. (4) Conclusions: In the further research, development and implementation of PM, these ethical challenges need to be adequately addressed.
(1) 背景:由于以慢性炎症为潜在病因的疾病负担沉重,人们对精准医学(PM)的发展寄予厚望。我们的研究从该领域临床医生和研究人员的角度探讨了这一发展的益处和可能存在的风险。我们向这些专业人士询问了他们的研究现状以及他们对精准医学的期望、担忧、价值观和态度。(2) 方法:采用扎根理论方法,我们对17名临床医生和研究人员进行了定性访谈。为了进行受访者验证,我们在一次验证研讨会上与参与者讨论了研究结果。(3) 结果:专业人士期望精准医学在慢性炎症方面能带来多重益处。他们阐述了专业人员和患者在慢性炎症性疾病精准医学发展中的作用。针对少数群体数据缺乏整合、数据滥用和歧视风险、小群体可能无治疗方案可用的潜在风险、在培养健康生活方式方面缺乏专业支持和政治措施、部分人群难以进入炎症诊所的问题以及为所有人提供精准医学资金的困难等方面,提出了伦理、流程相关和经济方面的挑战。(4) 结论:在精准医学的进一步研究、开发和实施中,需要充分应对这些伦理挑战。