Belfrage Sara, Lynöe Niels, Helgesson Gert
Stockholm Centre for Healthcare Ethics; Department of Learning, Informatics, Management and Ethics; Karolinska Institutet.
Public Health Ethics. 2020 Nov 27;14(1):23-34. doi: 10.1093/phe/phaa035. eCollection 2021 Apr.
We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed to investigate what views are held by the general public, and what aspects matter for the willingness to let one's data be used not only for one's own care but also for other purposes. We found that while there is a broad willingness to let one's data be used, the possibility to influence that use is considered important. The study also indicated that when respondents are required to balance different interests, priority is typically given to compulsory schemes ensuring that data are available where needed, rather than voluntary participation and data protection. The policy implications to be drawn from this are not self-evident, however, since the fact that a majority has a certain attitude does not by itself determine the most adequate policy.
我们通过分析1645人回答的一项调查数据，研究了瑞典民众对健康数据使用的态度。健康数据在多种用途上可能很有用。然而，健康信息仍然敏感。因此，在许多情况下，必须在这些相互对立的考虑因素之间取得平衡。数据相关者的态度将影响规范健康数据使用政策的合法性认知。我们旨在调查公众持有何种观点，以及哪些方面对于不仅愿意让自己的数据用于自身医疗护理，还愿意用于其他目的至关重要。我们发现，虽然人们普遍愿意让自己的数据被使用，但认为能够影响这种使用很重要。该研究还表明，当要求受访者平衡不同利益时，通常优先考虑确保数据在需要时可用的强制计划，而不是自愿参与和数据保护。然而，从中得出的政策含义并不明显，因为大多数人有某种态度这一事实本身并不能决定最适当的政策。
