Department of Health Sciences and Technology, ETH Zurich, Zurich, Switzerland
Department of Health Sciences and Technology, ETH Zurich, Zurich, Switzerland.
J Med Ethics. 2022 Mar;48(3):184-188. doi: 10.1136/medethics-2020-106244. Epub 2021 Mar 15.
As donor trust legitimises research, trust is vital for research in the fields of biomedicine, genetics, translational medicine and personalised medicine. For parts of the donor community, the consent signature is a sign of trust in research. Many consent processes in biomedical research ask donors to provide their data for an unspecified future use, which introduces uncertainty of the unknown. This uncertainty can jeopardise donor trust or demand blind trust. But which donor wants to trust blindly? To reduce this uncertainty, we explore first, which future-proof actors donors could trust when signing a consent form. Second, we discuss the question and what prevents donor trust from expiring. Finally, we present possible measures that can help to nurture trust in the far future. In this article, we draw on our previous research on trust in biomedical research, on trust in the broader healthcare system and Niklas Luhmann's and Anthony Giddens' trust theories. Our findings suggest that, in the far future, researchers will need to consider donor autonomy, as well as societal norms and values of the time period in which the data were donated. They will need to find mechanisms where possible to publicly announce the use of old data sets. However, foremost researchers will need to treat the data respectfully. It remains vital that professionals and the society continue to elaborate on the norms and values that shape the common understanding of what is morally right and wrong when researching data.
由于捐赠者信任使研究合法化，因此信任对于生物医学、遗传学、转化医学和个性化医学领域的研究至关重要。对于部分捐赠者群体而言，同意书签名是对研究的信任的标志。许多生物医学研究的同意过程要求捐赠者提供其数据供未来不确定的用途，这引入了未知的不确定性。这种不确定性可能会危及捐赠者的信任或要求盲目信任。但是，哪个捐赠者愿意盲目信任呢？为了减少这种不确定性，我们首先探讨了在签署同意书时捐赠者可以信任的未来证明的参与者。其次，我们讨论了防止捐赠者信任失效的问题。最后，我们提出了一些可能有助于培养对遥远未来的信任的措施。在本文中，我们借鉴了我们之前关于生物医学研究中的信任、更广泛的医疗保健系统中的信任以及 Niklas Luhmann 和 Anthony Giddens 的信任理论的研究。我们的研究结果表明，在遥远的未来，研究人员将需要考虑捐赠者的自主权，以及当时捐赠数据的社会规范和价值观。他们将需要找到可能的机制来公开宣布旧数据集的使用情况。但是，最重要的是，研究人员需要尊重数据。专业人士和社会继续详细阐述规范和价值观，以形成对研究数据时道德上正确和错误的共同理解，这仍然至关重要。
