Privacy Enhancing Techniques

2003 ◽  
Vol 42 (02) ◽  
pp. 148-153 ◽  
Author(s):  
B. Claerhout ◽  
F. De Meyer ◽  
G. J. E. De Moor
Keyword(s):  
Human Rights ◽  
Privacy Protection ◽  
Genetic Data ◽  
Third Parties ◽  
Data Sources ◽  
Ethical Challenges ◽  
Valuable Data ◽  
Interactive Data ◽  
Based Medicine ◽  
Privacy Enhancing Techniques

Summary Objectives: To introduce some of the privacy protection problems related to genomics based medicine and to highlight the relevance of Trusted Third Parties (TTPs) and of Privacy Enhancing Techniques (PETs) in the restricted context of clinical research and statistics. Methods: Practical approaches based on two different pseudonymisation models, both for batch and interactive data collection and exchange, are described and analysed. Results and Conclusions: The growing need of managing both clinical and genetic data raises important legal and ethical challenges. Protecting human rights in the realm of privacy, while optimising research potential and other statistical activities is a challenge that can easily be overcome with the assistance of a trust service provider offering advanced privacy enabling/enhancing solutions. As such, the use of pseudonymisation and other innovative Privacy Enhancing Techniques can unlock valuable data sources.

scholarly journals Community-curated and standardised metadata of published ancient metagenomic samples with AncientMetagenomeDir

2020 ◽  
Author(s):  
James A. Fellows Yates ◽  
Aida Andrades Valtueña ◽  
Ashild J. Vågene ◽  
Becky Cribdon ◽  
Irina M. Velsko ◽  
...  
Keyword(s):  
Large Scale ◽  
Genetic Data ◽  
Data Retrieval ◽  
Data Sources ◽  
Valuable Data ◽  
Dna And Rna ◽  
Wide Range ◽  
Evolutionary Studies ◽  
Meta Analyses ◽  
Microbial Samples

ABSTRACTAncient DNA and RNA are valuable data sources for a wide range of disciplines. Within the field of ancient metagenomics, the number of published genetic datasets has risen dramatically in recent years, and tracking this data for reuse is particularly important for large-scale ecological and evolutionary studies of individual microbial taxa, microbial communities, and metagenomic assemblages. AncientMetagenomeDir (archived at https://doi.org/10.5281/zenodo.3980833) is a collection of indices of published genetic data deriving from ancient microbial samples that provides basic, standardised metadata and accession numbers to allow rapid data retrieval from online repositories. These collections are community-curated and span multiple sub-disciplines in order to ensure adequate breadth and consensus in metadata definitions, as well as longevity of the database. Internal guidelines and automated checks to facilitate compatibility with established sequence-read archives and term-ontologies ensure consistency and interoperability for future meta-analyses. This collection will also assist in standardising metadata reporting for future ancient metagenomic studies.

scholarly journals La consulenza genetica in Italia: problemi, regole di consenso informato, trattamento dei dati genetici e privacy

2009 ◽  
Vol 58 (6) ◽  
Author(s):  
Marina Casini ◽  
Claudio Sartea
Keyword(s):  
Human Rights ◽  
Legal System ◽  
Privacy Protection ◽  
Genetic Research ◽  
Genetic Data ◽  
Third Party ◽  
Professional Profile ◽  
The Subject ◽  
Access To Data ◽  
And Diffusion

Il contributo presenta una sintetica disamina di alcune delle questioni più rilevanti nell’ambito della consulenza genetica, dell’informazione e del consenso, della tutela della privacy in ordine al trattamento dei dati genetici, alle loro modalità di raccolta e conservazione degli stessi nonché in ordine alle loro modalità di comunicazione e diffusione. Si tratta sicuramente di uno degli ambiti di studio più complessi e densi. Esso nasce, come osservano gli Autori, dalla necessità di armonizzare le grandi promesse della ricerca genetica con l’esigenza di non ledere i diritti fondamentali della persona. Tale esigenza è particolarmente intensa poiché un uso inappropriato dei dati genetici, la loro incontrollabile divulgazione, o un accesso indebito da parte di terzi, possono danneggiare gravemente – sia sotto il profilo professionale, sia nella vita di relazione – il soggetto da cui provengono le informazioni. L’argomento viene trattato esaminando fonti normative e documenti attinenti soprattutto all’ordinamento giuridico italiano, ma non mancano riferimenti a normative comunitarie e internazionali. ---------- The contribution offers a synthetic examination of some of the most remarkable questions within genetic advice, information and consent, privacy protection for genetic data processing, formalities of collection and maintenance as well as for formalities of communication and diffusion of data. It is of course one of the more complex and dense circles of study. As the Authors observes - it derives from the necessity to harmonize the great promises of genetic research with the demand of the respect of human rights. Such demand is particularly intense since an inadequate use of genetic data, their uncontrollable spreading or an undue access to data from a third party, may seriously damage - both under the professional profile, and within the relational life - the subject from which information originate. The matter is dealt examining normative sources and documents connected above all to the Italian legal system, but there are references to community and international commumnity.

Accountability in Global Governance

2020 ◽  
Author(s):  
Gisela Hirschmann
Keyword(s):  
Human Rights ◽  
Global Governance ◽  
International Organizations ◽  
Third Parties ◽  
Human Rights Violations ◽  
The European Union ◽  
Economic Rights ◽  
The Right ◽  
Austerity Policy ◽  
Comprehensive Study

How can international organizations (IOs) like the United Nations (UN) and their implementing partners be held accountable if their actions and policies violate fundamental human rights? Political scientists and legal scholars have shed a much-needed light on the limits of traditional accountability when it comes to complex global governance. However, conventional studies on IO accountability fail to systematically analyze a related, puzzling empirical trend: human rights violations that occur in the context of global governance do not go unnoticed altogether; they are investigated and sanctioned by independent third parties. This book puts forward the concept of pluralist accountability, whereby third parties hold IOs and their implementing partners accountable for human rights violations. We can expect pluralist accountability to evolve if a competitive environment stimulates third parties to enact accountability and if the implementing actors are vulnerable to human rights demands. Based on a comprehensive study of UN-mandated operations in Afghanistan, Bosnia, and Kosovo, the European Union Troika’s austerity policy, and global public–private health partnerships in India, this book demonstrates how competition and human rights vulnerability shape the evolution of pluralist accountability in response to diverse human rights violations, such as human trafficking, the violation of the rights of detainees, economic rights, and the right to consent in clinical trials. While highlighting the importance of studying alternative accountability mechanisms, this book also argues that pluralist accountability should not be regarded as a panacea for IOs’ legitimacy problems, as it is often less legalized and might cause multiple accountability disorder.

scholarly journals Has the GDPR hype affected users’ reaction to cookie disclaimers?

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Oksana Kulyk ◽  
Nina Gerber ◽  
Annika Hilt ◽  
Melanie Volkamer
Keyword(s):  
Data Protection ◽  
Media Coverage ◽  
Privacy Protection ◽  
Third Parties ◽  
Survey Study ◽  
Decision To Leave ◽  
General Data Protection Regulation ◽  
General Data ◽  
Negative Feelings

  For many years, cookies have been widely used by websites, storing information about users’ behaviour. While enabling additional functionality and potentially improving user experience, cookies can be a threat to users’ privacy, especially cookies used by third parties for data analysis. Websites providers are legally required to inform users about cookie use by displaying a so-called cookie disclaimer. We conducted a survey study in 2017 to investigate how users perceive this disclaimer and whether it affects their actual behaviour. We found that while most participants had negative feelings towards the disclaimer, the disclaimer text had no significant effect on their decision to leave the website. Since the extensive media coverage of data protection issues that accompanied the EU General Data Protection Regulation (GDPR) entry into force in May 2018 may have sensitized users to privacy protection, we conducted a follow-up study in December 2018. Our results suggest that users did not change their attitude towards cookie use in favour of privacy protection, but got even more accustomed to the use of cookies, also by third parties. Moreover, many users seem to have misconceptions regarding cookie use. We discuss the implications of our results for the users’ right to make an informed decision about their privacy.

Protecting Medical and Genetic Data

1997 ◽  
Vol 4 (4) ◽  
pp. 361-388 ◽  
Author(s):  
Keyword(s):  
Human Rights ◽  
Data Protection ◽  
Western Europe ◽  
Modern Society ◽  
Genetic Data ◽  
Human Rights Law ◽  
Council Of Europe ◽  
Basic Principles ◽  
East European ◽  
Separate Treatment

AbstractData protection was introduced in Western Europe in the early 1970s and now also extends to Central and East European countries. It is a remarkable example of the response given by Human Rights law to the challenges of modern society. The applications of science and technology in the fields of informatics and biomedicine have produced results unforeseen by any legislator. Regulation has been developed under the leadership of the Council of Europe. It aims at laying down basic principles of data protection but without blocking the future. The author presents a historical survey of the Council of Europe's two main treaties relevant to protection of medical and genetic data, those of 1981 (data protection) and 1997 (bioethics) and of several other texts. He concludes that the European Human Rights Convention should be reinforced with specific provisions on 'medical human rights' and on data protection. He also comes out in favour of separate treatment of traditional medical files and genetic data.

Prosecutors and National Security

2021 ◽  
pp. 538-558
Author(s):  
Kent Roach
Keyword(s):  
Human Rights ◽  
National Security ◽  
Rule Of Law ◽  
Ethical Challenges ◽  
Criminal Cases ◽  
The Rule Of Law ◽  
The Third ◽  
Relative Rarity ◽  
The Many ◽  
Operational Aspects

This chapter examines the distinct operational and ethical challenges that prosecutors face in national security and especially terrorism cases. The second part of this chapter focuses on the operational challenges that prosecutors face. These include demands for specialization that may be difficult to fulfill given the relative rarity of national security prosecutions; the availability of special investigative powers not normally available in other criminal cases; exceptionally broad and complex offenses; and the demands of federalism and international cooperation. The third part examines ethical and normative challenges that run throughout the many operational aspects of the prosecutorial role in national security cases. These include the challenges of ensuring that often exceptional national security laws are enforced in a manner consistent with the rule of law and human rights. There are also challenges of maintaining an appropriate balance between legitimate claims of secrecy and legitimate demands for disclosure and between maintaining prosecutorial independence and discretion while recognizing the whole of government and whole of society effects of the many difficult decisions that prosecutors must make in national security cases.

scholarly journals Examining Disclosure Risk and Data Utility: An Administrative Data Case Study

2014 ◽  
Vol 9 (1) ◽  
pp. 12-24
Author(s):  
Michael Comerford
Keyword(s):  
Administrative Data ◽  
Real World ◽  
Data Sources ◽  
Sufficient Data ◽  
Ethical Challenges ◽  
Data Utility ◽  
Disclosure Risk ◽  
Individual Privacy

The plethora of new data sources, combined with a growing interest in increased access to previously unpublished data, poses a set of ethical challenges regarding individual privacy. This paper sets out one aspect of those challenges: the need to anonymise data in such a form that protects the privacy of individuals while providing sufficient data utility for data users. This issue is discussed using a case study of Scottish Government’s administrative data, in which disclosure risk is examined and data utility is assessed using a potential ‘real-world’ analysis.

Health Disparities and New Health Technologies – A Patients’ and Human Rights Perspective

2021 ◽  
pp. 1-23
Author(s):  
Mette Hartlev
Keyword(s):  
Human Rights ◽  
Health Disparities ◽  
Digital Health ◽  
Population Based ◽  
Human Right ◽  
Health Technologies ◽  
Left Behind ◽  
Human Rights Based Approach ◽  
Based Medicine ◽  
The Impact

Abstract The human right to health requires that everyone should have equal opportunities to enjoy the highest attainable standard of health. In practice, this is hard to achieve, as health is shaped by social determinants. This article explores the impact personalized medicine and use of big data may have on health disparities. New health technologies offer a lot of hope for more individual and better health promotion and care, which potentially could be beneficial for the most deprived. However, there are also concerns that not all population groups will profit equally from this new population-based medicine, and that new digital health technologies will maintain – or even reinforce – existing health disparities. This article suggests using insights from poverty studies combined with a patients’ and human rights-based approach to ensure that the most deprived are not left behind in the application of new health technologies.

Privacy Nudges

2015 ◽  
pp. 256-264
Author(s):  
Barbara Sandfuchs
Keyword(s):  
Privacy Protection ◽  
Traditional Approach ◽  
Genetic Data ◽  
Sensitive Data ◽  
Self Disclosure ◽  
Alternative Approach ◽  
The Future ◽  
Scholarly Attention

To fight the risks caused by excessive self-disclosure especially regarding sensitive data such as genetic ones, it might be desirable to prevent certain disclosures. When doing so, regulators traditionally compel protection, for example by prohibiting the collection and/or use of genetic data even if citizens would like to share these data. This chapter provides an introduction into an alternative approach which has recently received increased scholarly attention: privacy protection by the use of nudges. Such nudges may in the future provide an alternative to compelled protection of genetic data or complement the traditional approach. This chapter first describes behavioral psychology's findings that citizens sometimes act irrational. This statement is consequently explained with the insights that these irrationalities are often predictable. Thus, a solution might be to correct them by the use of nudges.

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