The Data Protection Directive and Medical Research Across Europe

Beyleveld, Deryck; Townend, David; Rouillé-Mirza, Ségolène; Wright, Jessica

doi:10.4324/9781315240350

Cited by 4 publications

(1 citation statement)

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“…33 Through consultation of the international data privacy law literature, we then conducted a more exhaustive review of the definitions of, or statements on, sensitive personal data in the major data privacy laws in jurisdictions around the world (covering >60 laws in 55 jurisdictions; see Supplementary Table S1). 34–41 This research led to the identification of one additional category of sensitive data, namely data concerning disability. That so much had been covered through the initial study of EU Member States and US documents reflects the degree of international harmonisation of standards aligned with these nations.…”

Section: Methodsmentioning

confidence: 99%

Sharing health-related data: a privacy test?

2016

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Greater sharing of potentially sensitive data raises important ethical, legal and social issues (ELSI), which risk hindering and even preventing useful data sharing if not properly addressed. One such important issue is respecting the privacy-related interests of individuals whose data are used in genomic research and clinical care. As part of the Global Alliance for Genomics and Health (GA4GH), we examined the ELSI status of health-related data that are typically considered ‘sensitive’ in international policy and data protection laws. We propose that ‘tiered protection’ of such data could be implemented in contexts such as that of the GA4GH Beacon Project to facilitate responsible data sharing. To this end, we discuss a Data Sharing Privacy Test developed to distinguish degrees of sensitivity within categories of data recognised as ‘sensitive’. Based on this, we propose guidance for determining the level of protection when sharing genomic and health-related data for the Beacon Project and in other international data sharing initiatives.

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Section: Methodsmentioning

confidence: 99%

Sharing health-related data: a privacy test?

2016

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The ethics of biometrics: the risk of social exclusion from the widespread use of electronic identification

Wickins

2007

SCI ENG ETHICS

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Discussions about biotechnology tend to assume that it is something to do with genetics or manipulating biological processes in some way. However, the field of biometrics-the measurement of physical characteristics-is also biotechnology and is likely to affect the lives of more people more quickly than any other form. The possibility of social exclusion resulting from the use of biometrics data for such uses as identity cards has not yet been fully explored. Social exclusion is unethical, as it unfairly discriminates against individuals or classes of people. Social exclusion is unethical, as it unfairly discriminates against individuals or classes of people. This article looks at some of the ways in which social exclusion might arise from the use of biometric data, and introduces a model of balancing individual interests with which to analyse whether it is justified to run the risk of excluding some members of society for the benefit of others.

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WASP (Write a Scientific Paper): The right to privacy

Mallia

2018

Early Human Development

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The Data Protection Directive and Medical Research Across Europe

Cited by 4 publications

References 0 publications

Sharing health-related data: a privacy test?

Sharing health-related data: a privacy test?

The ethics of biometrics: the risk of social exclusion from the widespread use of electronic identification

WASP (Write a Scientific Paper): The right to privacy

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