The use of data from electronic health records in times of a pandemic-a legal and ethical assessment

被引:6
作者
Stoeger, Karl [1 ]
Schmidhuber, Martina [2 ,3 ]
机构
[1] Karl Franzens Univ Graz, Inst Publ Law & Polit Sci, Univ Str 15-C3, A-8010 Graz, Austria
[2] Karl Franzens Univ Graz, Inst Moral Theol, Chair Hlth Care Eth, Heinrichstr 78-B2, A-8010 Graz, Austria
[3] Univ Paris 09, Paris, France
来源
JOURNAL OF LAW AND THE BIOSCIENCES | 2020年 / 7卷 / 01期
关键词
Covid-19; data protection; medical ethics; pandemic; personal health records; trust;
D O I
10.1093/jlb/lsaa041
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
National electronic health record systems controlled (at least in parts) by the patient are becoming increasingly common. During a pandemic, data stored in such records could be used by health authorities to identify persons with a particular health risk. In this contribution, the authors focus-from-the perspective of law and medical ethics-on the question whether such state access to data could, under certain circumstances, be disadvantageous to a person's state of health in the long run. This may be the case if the data extracted is not only used for the purpose of informing persons, but serves as a basis for measures taken against the will of the individual concerned. This might be perceived as a "breach of trust" and could result in persons opting out of or not opting into an electronic health record system. Such unintended consequences raise concerns from an ethical and a legal point of view. It follows that, even in times of a pandemic, access to personal data stored in patient-controlled health records should be used as a last resort only. While this contribution deals with the legal framework within the EU, its considerations are transferable to other national electronic health record systems.
引用
收藏
页数:9
相关论文
共 13 条
[1]  
Beauchamp Tom L., 2019, CHILDRESS PRINCIPLES
[2]  
Bonomi S., 2016, ELECT HLTH RECORD CO
[3]  
Cohen Glenn, 2018, BIG DATA HLTH LAW BI
[4]   Patient access to electronic health records: Differences across ten countries [J].
Essen, Anna ;
Scandurra, Isabella ;
Gerrits, Reinie ;
Humphrey, Gayl ;
Johansen, Monika Alise ;
Kiergegaard, Patrick ;
Koskinen, Jani ;
Liaw, Siaw-Teng ;
Odeh, Souad ;
Ross, Peeter ;
Ancker, Jessica S. .
HEALTH POLICY AND TECHNOLOGY, 2018, 7 (01) :44-56
[5]   Margin of Appreciation and Incrementalism in the Case Law of the European Court of Human Rights [J].
Gerards, Janneke .
HUMAN RIGHTS LAW REVIEW, 2018, 18 (03) :495-515
[6]  
Haas P, 2017, ELEKTRONISCHE PATIEN
[7]  
HARRIS D, 2018, LAW EUROPEAN CONVENT, P212
[8]  
May Ruth, CARING PEOPLE HIGHES
[9]  
Meszaros J., 2019, MED LAW INT, V19, P159, DOI [DOI 10.1177/0968533219879975, 10.1177/0968533219879975]
[10]   The four principles: Can they be measured and do they predict ethical decision making? [J].
Page, Katie .
BMC MEDICAL ETHICS, 2012, 13