Data protection in grid-based multicentric clinical trials: killjoy or confidence-building measure?

2009 ◽  
Vol 367 (1898) ◽  
pp. 2729-2739 ◽  
Author(s):  
Marian Arning ◽  
Nikolaus Forgó ◽  
Tina Krügel
Keyword(s):  
Working Conditions ◽  
Data Protection ◽  
Contact Point ◽  
Genetic Research ◽  
Genetic Data ◽  
Safety Net ◽  
Data Protection Authority ◽  
Protection Legislation ◽  
Security Standards ◽  
Protection Authority

In order to protect the privacy of participating patients in multicentric genetic research projects and to improve the working conditions for researchers in such projects a data protection framework needs to be installed. In the first place, all genetic data processed in the project has to be pseudonymized. In addition to that, contracts have to be concluded between the project and each project partner to guarantee that genetic data are used only within the project and that each partner complies with data security standards. Furthermore, a central data protection authority has to be installed in the project to control the partners' compliance with these contracts and to serve as a central contact point for participants. If these conditions are fulfilled, only (de facto) anonymous data are used in the project, so that data protection legislation is not directly applicable. Second, each participant has to sign a special consent form for ethical reasons and as a fallback solution if the pseudonymization of the genetic data fails. With this safety net it is possible to protect the participants' privacy and to improve the working conditions for researchers.

scholarly journals Processing of Genetic Data under GDPR: Unresolved Conflict of Interests

2020 ◽  
Vol 14 (2) ◽  
pp. 151-176
Author(s):  
Petro Sukhorolskyi ◽  
Valeriia Hutsaliuk
Keyword(s):  
Data Protection ◽  
Genetic Research ◽  
Personal Data ◽  
Genetic Data ◽  
The European Union ◽  
Public Interests ◽  
Legal Norms ◽  
Unresolved Conflict ◽  
Protection Legislation ◽  
Data Subject

Over the last decades, developments in the fields of genetics and bioinformatics caused a marked increase in the processing of human genetic data by various companies and institutions. This results in the adoption of several international documents and the emergence of legal norms on the protection of genetic data. The paper examines how and to what extent the interests and rights of the data subject with regard to the processing of genetic data are protected in the European Union. It is concluded that under the GDPR this task is implemented through classifying genetic data as sensitive, reliance on anonymisation and pseudonymisation, as well as introduction of the procedure of data protection impact assessment. Nevertheless, given the unique characteristics of genetic data distinguishing them from other categories of personal data, these measures cannot be regarded as sufficient and effective. The paper argues that current EU data protection legislation creates favourable conditions for genetic research, thereby ensuring particular public interests, but does not establish a special regime for genetic data processing appropriate to potential threats in this field and risks to the rights of data subjects.

Brazil’s data protection failings may harm innovation

2019 ◽  
Keyword(s):  
Data Protection ◽  
Digital Economy ◽  
Content Type ◽  
General Data Protection Regulation ◽  
Data Protection Authority ◽  
Protection Legislation ◽  
General Data ◽  
Data Protection Law ◽  
Set Up ◽  
Protection Authority

Subject Brazil's new data protection law. Significance Brazil’s General Data Protection Law (LGPD) will come into effect in August 2020. Largely mirroring the EU’s General Data Protection Regulation (GDPR), the new legislation seeks to strengthen citizen privacy while also giving legal certainty to businesses engaging in data transfers. However, unlike EU jurisdictions, Brazil will not set up an autonomous data authority to enforce its legislation. Rather, its new National Data Protection Authority (ANPD) will be directly linked to the presidency and have no budgetary independence. Impacts A reduced talent pool will limit the growth of Brazilian firms in the digital economy. Shortages of relevant talent will affect companies’ ability to innovate. The shortcomings of Brazil’s data protection legislation could add a serious hurdle to the development of its digital economy.

scholarly journals Identifiability, Genomics and UK Data Protection Law

2010 ◽  
Vol 17 (4) ◽  
pp. 329-344 ◽  
Author(s):  
Liam Curren ◽  
Jane Kaye ◽  
Paula Boddington ◽  
Karen Melham ◽  
Naomi Hawkins ◽  
...  
Keyword(s):  
Data Protection ◽  
Genetic Research ◽  
Research Data ◽  
Genomic Research ◽  
Research Use ◽  
Next Generation Dna Sequencing ◽  
Ethical Concerns ◽  
Whole Genomes ◽  
Protection Legislation ◽  
Data Protection Law

AbstractAnalyses of individuals’ genomes — their entire DNA sequence — have increased knowledge about the links between genetics and disease. Anticipated advances in ‘next generation’ DNA-sequencing techniques will see the routine research use of whole genomes, rather than distinct parts, within the next few years. The scientific benefits of genomic research are, however, accompanied by legal and ethical concerns. Despite the assumption that genetic research data can and will be rendered anonymous, participants’ identities can sometimes be elucidated, which could cause data protection legislation to apply. We undertake a timely reappraisal of these laws — particularly new penalties — and identifiability in genomic research.

scholarly journals A Review of Personal Data Protection Law in Indonesia

2020 ◽  
Author(s):  
Muhammad Firdaus
Keyword(s):  
Data Protection ◽  
House Of Representatives ◽  
Personal Data ◽  
Privacy Rights ◽  
Legal Rules ◽  
Personal Data Protection ◽  
Personal Dignity ◽  
Data Protection Authority ◽  
Individual Ability ◽  
Protection Authority

The importance of protecting personal data issue starts strengthened along with the increasing number of telephone user mobile and internet in Indonesia. Several cases were sticking out, especially those that have a connection with the leak of personal data and leads to fraud or crime, strengthen the discourse on the importance of making legal rules to protect personal data. In Indonesia, the protection of personal data is related to the concept of privacy, which is the idea of safeguarding the integrity and personal dignity. Privacy rights are also an individual ability to determine who is holding their information and how the information is used. Currently, Indonesia’s long-awaited comprehensive draft Law on the Protection of Personal Data has been submitted by President Joko Widodo to the Chairperson of the Indonesian House of Representatives on January 24th, 2020. When passed, it will be the first framework legislation on personal data protection in Indonesia. This paper discusses and summarizes the progress of personal data protection based on the law and the regulatory authority in Indonesia. The result shows that there is a lack of explanation of the term data protection authority (DPA) in the final Bill submitted.

US tech majors will face more EU privacy challenges

2015 ◽  
Keyword(s):  
Data Protection ◽  
Personal Data ◽  
Content Type ◽  
User Adaptation ◽  
Technology Firms ◽  
Full Compliance ◽  
Data Protection Authority ◽  
Sensitive Issues ◽  
Protection Authority ◽  
The Eu

Subject Action by European regulators and courts against US technology firms. Significance The Hamburg state data protection authority this month rejected an appeal by Google against the authority's decision requiring changes to Google's handling of users' personal data. This latest action comes as negotiations on new EU data-protection rules have reached a critical stage. These are raising questions about the transatlantic handling of personal data, an increasingly important resource commercially and politically. Impacts Policy differences within the EU will make it hard for the bloc to reach agreement on its proposed new data-protection rules this year. Given that user adaptation to any new EU regime will take at least two years, full compliance will not occur before 2018. Data protection will remain the most sensitive issues in transatlantic tensions over internet governance. Privacy and data-protection campaigners will try to block any transatlantic agreements on these issues, via legislative or judicial means.

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