Ethics, privacy and the legal framework governing medical data: opportunities or threats for biomedical and public health research?

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Abstract

Privacy is an important concern in any research programme that deals with personal medical data. In recent years, ethics and privacy have become key considerations when conducting any form of scientific research that involves personal data. These issues are now addressed in healthcare professional training programmes. Indeed, ethics, legal frameworks and privacy are often the subject of much confusion in discussions among healthcare professionals. They tend to group these different concepts under the same heading and delegate responsibility for “ethical” approval of their research programmes to ethics committees. Public health researchers therefore need to ask questions about how changes to legal frameworks and ethical codes governing privacy in the use of personal medical data are to be applied in practice. What types of data do these laws and codes cover? Who is involved? What restrictions and requirements apply to any research programme that involves medical data?

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A Systematic Review of Re-Identification Attacks on Health Data

Khaled El Emam, Elizabeth Jonker, Luk Arbuckle … (2011)

Background Privacy legislation in most jurisdictions allows the disclosure of health data for secondary purposes without patient consent if it is de-identified. Some recent articles in the medical, legal, and computer science literature have argued that de-identification methods do not provide sufficient protection because they are easy to reverse. Should this be the case, it would have significant and important implications on how health information is disclosed, including: (a) potentially limiting its availability for secondary purposes such as research, and (b) resulting in more identifiable health information being disclosed. Our objectives in this systematic review were to: (a) characterize known re-identification attacks on health data and contrast that to re-identification attacks on other kinds of data, (b) compute the overall proportion of records that have been correctly re-identified in these attacks, and (c) assess whether these demonstrate weaknesses in current de-identification methods. Methods and Findings Searches were conducted in IEEE Xplore, ACM Digital Library, and PubMed. After screening, fourteen eligible articles representing distinct attacks were identified. On average, approximately a quarter of the records were re-identified across all studies (0.26 with 95% CI 0.046–0.478) and 0.34 for attacks on health data (95% CI 0–0.744). There was considerable uncertainty around the proportions as evidenced by the wide confidence intervals, and the mean proportion of records re-identified was sensitive to unpublished studies. Two of fourteen attacks were performed with data that was de-identified using existing standards. Only one of these attacks was on health data, which resulted in a success rate of 0.00013. Conclusions The current evidence shows a high re-identification rate but is dominated by small-scale studies on data that was not de-identified according to existing standards. This evidence is insufficient to draw conclusions about the efficacy of de-identification methods.

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Harmonization may be counterproductive--at least for parts of Europe where public health research operates effectively.

Timo Hakulinen, Marc Arbyn, David H Brewster … (2011)

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Clinical teachers working in primary care: what would they like changed in the medical school?

Marcus A Henning, R D Pinnock, Rachel J. Hawken … (2011)

General practitioners (GPs) working as clinical teachers are likely to influence medical students' level of community-based learning. This paper aimed to ascertain clinical teachers' views in relation to The University of Auckland about their clinical learning environment. A total of 34 clinical teachers working in primary care contributed to this study. To gauge their level of involvement in teaching and learning, the clinical teachers were asked about issues such as their confidence, available time, sufficient clinical learning opportunities, clear learning objectives to teach students and what they would like changed. The GPs appeared confident, felt there were sufficient learning opportunities for students and that their students were part of the team. Less experienced teachers expressed less confidence than more experienced peers. There was some hesitancy in terms of coping with time and feedback. Some clinical teachers were unclear about the learning objectives presented to students. Several issues that emerged--including available time and financial rewards--are difficult to resolve. Curriculum and selection are evolving issues requiring constant monitoring and alignment with increasing numbers of students studying medicine, increased ethical awareness, more diverse teaching systems and more advanced technologies. Non-faculty clinicians need adequate representation on curriculum committees and involvement in clinical education initiatives. Issues of cultural competency and professional development were raised, suggesting the need for more established links between university and GPs.

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Author and article information

Journal

Journal ID (nlm-ta): Arch Public Health

Journal ID (iso-abbrev): Arch Public Health

Title: Archives of Public Health

Publisher: BioMed Central

ISSN (Print): 0778-7367

ISSN (Electronic): 2049-3258

Publication date Collection: 2013

Publication date (Electronic): 21 June 2013

Volume: 71

Issue: 1

Page: 15

Affiliations

[1 ]Research centre in epidemiology, biostatistics and clinical trials, School of Public Health, Université Libre de Bruxelles (ULB), Route de Lennik 808, CP 596, 1070, Brussels, Belgium

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Publisher ID: 0778-7367-71-15

DOI: 10.1186/0778-7367-71-15

PMC ID: 3691608

PubMed ID: 23799934

SO-VID: 26f1a807-2068-42fe-bd5c-0867708d9fa0

License:

This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Ethics, privacy and the legal framework governing medical data: opportunities or threats for biomedical and public health research?

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Most cited references 8

A Systematic Review of Re-Identification Attacks on Health Data

Harmonization may be counterproductive--at least for parts of Europe where public health research operates effectively.

Clinical teachers working in primary care: what would they like changed in the medical school?

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