The Experts below are selected from a list of 8577 Experts worldwide ranked by ideXlab platform
Sharon Kingman - One of the best experts on this subject based on the ideXlab platform.
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The New Law on Sex Education
Health Education, 1994Co-Authors: Sharon KingmanAbstract:Summarizes the main changes affecting how schools teach sex education, resulting from the implementation of the Education Act 1993. Describes the partial nature of the parental Right to Withdraw children from sex education lessons. Reviews aspects of the new guidance which schools will need to address in developing their own policies on sex education.
Gert Helgesson - One of the best experts on this subject based on the ideXlab platform.
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Potential harms, anonymization, and the Right to Withdraw consent to biobank research.
European journal of human genetics : EJHG, 2005Co-Authors: Stefan Eriksson, Gert HelgessonAbstract:This paper discusses the potential harms involved in biobank research and how ethical review, informed consent, Withdrawals, and anonymization of samples should be handled in the light of these harms. There is less risk involved in biobank research than in human subject research; it should therefore be treated differently. In our view, anonymization should not be an automatically permissible response to requests for Withdrawal. Nor should a request for Withdrawal necessarily stop research on identifiable samples. Apart from not being particularly appropriate for protecting the interests of individuals, anonymization of samples has a negative impact on research. We suggest that the current view on Withdrawal from research, supported by the Declaration of Helsinki and subsequent ethical guidelines, be abandoned in the context of biobank research and be replaced by an approach inspired by the Nuremberg Code. This approach requires those wishing to Withdraw their samples from research to present sufficient reason for doing so. Our interpretation of 'sufficient reason' includes all those involving genuine, deeply felt concerns that are not based on misconceptions. Still, this underlines the fact that we all share a responsibility for health research and that no one should take Withdrawal from biobank research lightly.
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The Right to Withdraw Consent to Research on Biobank Samples
Medicine health care and philosophy, 2005Co-Authors: Gert Helgesson, Linus JohnssonAbstract:Ethical guidelines commonly state that research subjects should have a Right to Withdraw consent to participate. According to the guidelines we have studied, this Right applies also to research on biological samples. However, research conducted on human subjects themselves differs in important respects from research on biological samples. It is therefore not obvious that the same Rights should be granted research participants in the two cases. This paper investigates arguments for and against granting a Right to Withdraw consent to research on biobank samples. We conclude that (1) there are no explicit arguments for such a Right in the guidelines we have studied, (2) the arguments against such a Right are inconclusive, (3) considerations of autonomy, privacy, personal integrity, and trust in medical research provide sufficient reasons for granting a Right to Withdraw consent to research on biobank samples, (4) in certain cases, research participants should be allowed to waive this Right.
Hannes Hofmeister - One of the best experts on this subject based on the ideXlab platform.
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‘Should I Stay or Should I Go ?’—A Critical Analysis of the Right to Withdraw from the EU
European Law Journal, 2010Co-Authors: Hannes HofmeisterAbstract:This article seeks to answer one of the key questions facing the EU in the future: what effect will the new Right to Withdraw have on the EU? Will it lead to a gradual fragmentation of what was supposed to be ‘an ever closer union of unlimited duration’? Or will it even mark the beginning of the end of the Union? In order to answer these complex questions, this article first briefly analyses the pre‐Lisbon situation regarding Withdrawal. It then critically examines the newly inserted Article 50, which codifies the Right to Withdraw. Having done so, it will then examine whether non‐legal considerations, such as political and economic reasons, will render Withdrawal a theoretical rather than realistic option.
Jane Kaye - One of the best experts on this subject based on the ideXlab platform.
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The evolution of Withdrawal: negotiating research relationships in biobanking
Life sciences society and policy, 2014Co-Authors: Karen Melham, Linda Briceño Moraia, Colin Mitchell, Michael Morrison, Harriet Teare, Jane KayeAbstract:The Right to Withdraw from research, along with the necessity of adequately informed consent, is at the heart of the post-Nuremburg code of ethical safeguards in biomedical research on human participants. As biomedical research moves away from direct interventional studies towards research using networks of linked human tissue samples and data, however, questions arise about what Withdrawal can and should mean in these new contexts. Some of the more expansive traditional understandings, such as the Right to Withdraw from a study `at any time' are limited in practice by the nature of biobank- supported research, particularly where it makes possible widespread dissemination and ongoing reuse of data. It is time for a more nuanced, granular arrangement for Withdrawal, appropriate to the ongoing relationships between participants and long-term biobanking enterprises.
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revoking consent a blind spot in data protection law
Computer Law & Security Review, 2010Co-Authors: Liam Curren, Jane KayeAbstract:Abstract The flow of personal data throughout the public and private sectors is central to the functioning of modern society. The processing of these data is, however, increasingly being viewed as a major concern, particularly in light of many recent high profile data losses. It is generally assumed that individuals have a Right to Withdraw, or revoke, their consent to the processing of their personal data by others; however this may not be straightforward in practice, or addressed adequately by the law. Examination of the creation of data protection legislation in Europe and the UK, and its relationship with human Rights law, suggests that such a general Right to Withdraw consent was assumed to be inbuilt, despite the lack of express provisions in both the European Data Protection Directive and UK Data Protection Act. In this article we highlight potential shortcomings in the provisions that most closely relate to this Right in the UK Act. These raise questions as to the extent of meaningful Rights of revocation, and thus Rights of informational privacy, afforded to individuals in a democratic society.
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Revoking consent: A ‘blind spot’ in data protection law?
Computer Law & Security Review, 2010Co-Authors: Liam Curren, Jane KayeAbstract:Abstract The flow of personal data throughout the public and private sectors is central to the functioning of modern society. The processing of these data is, however, increasingly being viewed as a major concern, particularly in light of many recent high profile data losses. It is generally assumed that individuals have a Right to Withdraw, or revoke, their consent to the processing of their personal data by others; however this may not be straightforward in practice, or addressed adequately by the law. Examination of the creation of data protection legislation in Europe and the UK, and its relationship with human Rights law, suggests that such a general Right to Withdraw consent was assumed to be inbuilt, despite the lack of express provisions in both the European Data Protection Directive and UK Data Protection Act. In this article we highlight potential shortcomings in the provisions that most closely relate to this Right in the UK Act. These raise questions as to the extent of meaningful Rights of revocation, and thus Rights of informational privacy, afforded to individuals in a democratic society.
Dave Lewis - One of the best experts on this subject based on the ideXlab platform.
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ESWC - GConsent - A Consent Ontology Based on the GDPR.
The Semantic Web, 2019Co-Authors: Harshvardhan Jitendra Pandit, Declan O'sullivan, Christophe Debruyne, Dave LewisAbstract:Consent is an important legal basis for the processing of personal data under the General Data Protection Regulation (GDPR), which is the current European data protection law. GPDR provides constraints and obligations on the validity of consent, and provides data subjects with the Right to Withdraw their consent at any time. Determining and demonstrating compliance to these obligations require information on how the consent was obtained, used, and changed over time. Existing work demonstrates feasibility of semantic web technologies in modelling information and determining compliance for GDPR. Although these address consent, they currently do not model all the information associated with it. In this paper, we address this by first presenting our analysis of information associated with consent under the GDPR. We then present GConsent, an OWL2-DL ontology for representation of consent and its associated information such as provenance. The paper presents the methodology used in the creation and validation of the ontology as well as an example use-case demonstrating its applicability. The ontology and this paper can be accessed online at https://w3id.org/GConsent.
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GConsent - A Consent Ontology Based on the GDPR
The Semantic Web, 2019Co-Authors: Harshvardhan Jitendra Pandit, Declan O’sullivan, Christophe Debruyne, Dave LewisAbstract:Consent is an important legal basis for the processing of personal data under the General Data Protection Regulation (GDPR), which is the current European data protection law. GPDR provides constraints and obligations on the validity of consent, and provides data subjects with the Right to Withdraw their consent at any time. Determining and demonstrating compliance to these obligations require information on how the consent was obtained, used, and changed over time. Existing work demonstrates feasibility of semantic web technologies in modelling information and determining compliance for GDPR. Although these address consent, they currently do not model all the information associated with it. In this paper, we address this by first presenting our analysis of information associated with consent under the GDPR. We then present GConsent, an OWL2-DL ontology for representation of consent and its associated information such as provenance. The paper presents the methodology used in the creation and validation of the ontology as well as an example use-case demonstrating its applicability. The ontology and this paper can be accessed online at https://w3id.org/GConsent .
