Facilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescue
Advances in data science allow for sophisticated analysis of increasingly large data sets. In the medical context, large volumes of data collected for health care purposes are contained in electronic health records. The real-life character and sheer amount of data contained in them makes electronic...
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| Format: | Journal article |
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Royal Society
2016
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| _version_ | 1797088338835931136 |
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| author | Savulescu, J Mann, S Sahakian, B |
| author_facet | Savulescu, J Mann, S Sahakian, B |
| author_sort | Savulescu, J |
| collection | OXFORD |
| description | Advances in data science allow for sophisticated analysis of increasingly large data sets. In the medical context, large volumes of data collected for health care purposes are contained in electronic health records. The real-life character and sheer amount of data contained in them makes electronic health records an attractive resource for public health and biomedical research. However, medical records contain sensitive information that could be misused by third parties. Medical confidentiality and respect for patients’ privacy and autonomy protects patient data, barring access to health records unless consent is given by the data subject. This creates a situation in which much beneficial records-based research is prevented or seriously undermined, because the refusal of consent by some patients introduces a systematic deviation, known as selection bias, from a representative sample of the general population, thus distorting research findings. Although research exemptions for the requirement of informed consent exists, they are rarely used in practice due to concerns over liability and a general culture of caution. In this paper, we argue that the problem of research access to sensitive data can be understood as a tension between the medical duties of confidentiality and beneficence. We attempt to show that the requirement of informed consent is not appropriate for all kinds of records-based research by distinguishing studies involving minimal risk from those that feature moderate or greater risks. We argue that the duty of easy rescue – the principle that persons should benefit others when this can be done at no or minimal risk to themselves – grounds the removal of consent requirements for minimally risky records-based research. Drawing on this discussion, we propose a risk-adapted framework for the facilitation of ethical uses of health data for the benefit of society. |
| first_indexed | 2024-03-07T02:48:36Z |
| format | Journal article |
| id | oxford-uuid:ace4faee-35a6-4c61-90a6-c7cc8580b027 |
| institution | University of Oxford |
| last_indexed | 2024-03-07T02:48:36Z |
| publishDate | 2016 |
| publisher | Royal Society |
| record_format | dspace |
| spelling | oxford-uuid:ace4faee-35a6-4c61-90a6-c7cc8580b0272022-03-27T03:31:56ZFacilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescueJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:ace4faee-35a6-4c61-90a6-c7cc8580b027Symplectic Elements at OxfordRoyal Society2016Savulescu, JMann, SSahakian, BAdvances in data science allow for sophisticated analysis of increasingly large data sets. In the medical context, large volumes of data collected for health care purposes are contained in electronic health records. The real-life character and sheer amount of data contained in them makes electronic health records an attractive resource for public health and biomedical research. However, medical records contain sensitive information that could be misused by third parties. Medical confidentiality and respect for patients’ privacy and autonomy protects patient data, barring access to health records unless consent is given by the data subject. This creates a situation in which much beneficial records-based research is prevented or seriously undermined, because the refusal of consent by some patients introduces a systematic deviation, known as selection bias, from a representative sample of the general population, thus distorting research findings. Although research exemptions for the requirement of informed consent exists, they are rarely used in practice due to concerns over liability and a general culture of caution. In this paper, we argue that the problem of research access to sensitive data can be understood as a tension between the medical duties of confidentiality and beneficence. We attempt to show that the requirement of informed consent is not appropriate for all kinds of records-based research by distinguishing studies involving minimal risk from those that feature moderate or greater risks. We argue that the duty of easy rescue – the principle that persons should benefit others when this can be done at no or minimal risk to themselves – grounds the removal of consent requirements for minimally risky records-based research. Drawing on this discussion, we propose a risk-adapted framework for the facilitation of ethical uses of health data for the benefit of society. |
| spellingShingle | Savulescu, J Mann, S Sahakian, B Facilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescue |
| title | Facilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescue |
| title_full | Facilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescue |
| title_fullStr | Facilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescue |
| title_full_unstemmed | Facilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescue |
| title_short | Facilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescue |
| title_sort | facilitating the ethical use of health data for the benefit of society electronic health records consent and the duty of easy rescue |
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