| 1. |
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| 2. |
- Andersson, Torbjörn, et al.
(författare)
-
Juridikens termer
- 2015. - 10
-
Bok (övrigt vetenskapligt/konstnärligt)abstract
- Juridikens termer är ett klassikt uppslagsverk som kortfattat förklarar centrala juridiska termer. Boken är sedan många år ett värdefullt hjälpmedel för verksamma jurister och studerande samt för alla andra som kommer i kontakt med frågor av juridisk natur.
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| 3. |
- Bessani, A., et al.
(författare)
-
BiobankCloud : A platform for the secure storage, sharing, and processing of large biomedical data sets
- 2016
-
Ingår i: 1st International Workshop on Data Management and Analytics for Medicine and Healthcare, DMAH 2015 and Workshop on Big-Graphs Online Querying, Big-O(Q) 2015 held in conjunction with 41st International Conference on Very Large Data Bases, VLDB 2015. - Cham : Springer. - 9783319415758 - 9783319415765 ; , s. 89-105
-
Konferensbidrag (refereegranskat)abstract
- Biobanks store and catalog human biological material that is increasingly being digitized using next-generation sequencing (NGS). There is, however, a computational bottleneck, as existing software systems are not scalable and secure enough to store and process the incoming wave of genomic data from NGS machines. In the BiobankCloud project, we are building a Hadoop-based platform for the secure storage, sharing, and parallel processing of genomic data. We extended Hadoop to include support for multi-tenant studies, reduced storage requirements with erasure coding, and added support for extensible and consistent metadata. On top of Hadoop, we built a scalable scientific workflow engine featuring a proper workflow definition language focusing on simple integration and chaining of existing tools, adaptive scheduling on Apache Yarn, and support for iterative dataflows. Our platform also supports the secure sharing of data across different, distributed Hadoop clusters. The software is easily installed and comes with a user-friendly web interface for running, managing, and accessing data sets behind a secure 2-factor authentication. Initial tests have shown that the engine scales well to dozens of nodes. The entire system is open-source and includes pre-defined workflows for popular tasks in biomedical data analysis, such as variant identification, differential transcriptome analysis using RNA-Seq, and analysis of miRNA-Seq and ChIP-Seq data.
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| 4. |
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| 5. |
- Chamberlain, Johanna, 1989-
(författare)
-
Integritet och skadestånd : Om skyddet för personuppgifter och privatliv i svensk rätt
- 2020
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- How can tort law help protect privacy in the digital age? This central issue is examined from different perspectives throughout the thesis, with an emphasis on personal information (also called informational privacy). Privacy has long been a debated topic in the Swedish legal system, for several reasons. One is the confusion surrounding the concept. Because of the difficulties both scholars and legislators have encountered regarding the definition of privacy, it is often seen as an interest too vague to regulate. Further, freedom of expression, freedom of the press and access to public documents – three rights that are often presented as opposites to privacy – have traditionally been prioritised in the legislative process.Apart from the binding ECHR and EU regulations, there are still no general clauses to protect privacy in Swedish law. Instead, this value has been approached in a cautious and even reluctant way, by establishing sanctions for certain privacy invasions. Consequently, the existing privacy protection is spread out over many different legal areas. In order to reconcile national principles with our European obligations, the author argues that it is necessary both to understand our “negative” Swedish approach and the “positive” ECHR and EU rights set out in Article 8 ECHR, Articles 7 and 8 of the EU Charter and the GDPR.After examining these legal traditions – with some comparative glances at US developments regarding the right to privacy – the thesis explores an alternative approach using a theoretical model referred to as contextual integrity. This framework is adapted for privacy protection in the digital age and focuses more on appropriate information flows than definitions of privacy. The model is used for a reading of Swedish tort law cases on privacy invasions, specifically in order to relate the tort law principles to existing or evolving social norms in the situations in which damage claims originate. It is suggested that, by developing an understanding for the relationship between the legal and the social in this dynamic area, we can make the most of tort law as a tool for privacy protection in the future.
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| 6. |
- Chamberlain, Johanna, 1989-, et al.
(författare)
-
Public Registries as Tools for Realising the Swedish Welfare State – Can the State still Be Trusted?
- 2021
-
Ingår i: Public Governance, Administration and Finances Law Review. - Budapest : Ludovika University Press. - 2498-6275 .- 2786-0736. ; 6:2, s. 35-52
-
Tidskriftsartikel (refereegranskat)abstract
- Sweden has a long tradition of transparency and keeping public archives and registries for the benefit of the society at large. Access to comprehensive public information, including registries containing individualised data, has been an integral part in the building of the Swedish welfare state. An important explanatory factor for its acceptance is the high level of social trust in the Swedish society, in that citizens to a large extent trust each other, the government and the public authorities and other institutions in the society. Over the last few decades, changes have taken place connected to digitalisation of the society and an increased awareness of the possible privacy intrusion that may follow. A number of Swedish “register scandals” have been unearthed in media, involving both private and public entities. In order to protect the Swedish cultural heritage of accessible archives and public information and retain social trust, the Swedish legislator should carefully balance the interest in transparency against the right to privacy and data protection following the case law of the European Court of Human Rights and EU law
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| 7. |
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| 8. |
- Chamberlain, Johanna, 1989-, et al.
(författare)
-
Supervision of Artificial Intelligence in the EU and the Protection of Privacy
- 2023
-
Ingår i: Florida International University Law Review. - Miami : Florida International University College of Law. - 2643-7767 .- 2643-7759. ; 17:2, s. 267-285
-
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- In this paper, the supervisory regime in the proposed EU General Regulation on AI will be analyzed, with the aim to critically assess the role of supervisory authorities with regards to AI systems in safeguarding both the development of AI systems and protecting democratic and individual rights. As with other supervisory structures in EU law, such as data protection and financial market law, the proposed network is to consist of an agency at the EU level, the new European Artificial Intelligence Board (EAIB), as well as supervisory authorities located at the national level. These regulatory and supervisory administrative structures can be identified as a part of the success story described as the Brussels effect, where EU regulatory regimes on data protection have had a global impact. However effective, can a network of independent supervisory authorities be trusted to effectively monitor the use of developing AI systems and at the same time balance the benefits and risk of the new technologies with the fundamental rights of privacy, data protection, freedom of information, and non-discrimination? Considering the largely unknown, dynamic character of AI, the central democratic function of freedom of information, and the individual right to privacy and data protection, the question must be asked if there is a limit to how much power it is reasonable to bestow on these networks of supervisory authorities.
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| 9. |
- Chamberlain, Johanna, et al.
(författare)
-
Supervision of Artificial Intelligence in the EU and the Protection of Privacy
- 2023
-
Annan publikation (populärvet., debatt m.m.)abstract
- After decades of technological advancements, artificial intelligence (AI) is now causing a flurry of movement in the legal domain. Lately, strong caveats from developers in the AI industry seem to have been accompanied by increasing societal concern about the potential negative effects on humans of unregulated AI. As part of its European Digital Strategy, the EU has put forward a number of initiatives addressing AI. The most important of these is the regulation referred to as the Artificial Intelligence Act (“the AI Act”), proposed by the Commission in April 2021 and currently still under negotiation. If passed, this will be the first comprehensive legal instrument regarding AI at a global level. Following the regulatory success of the GDPR, the EU could once again take the lead in developing regulatory regimes creating both fair competition and foreseeability for market actors and protection of the rights and interests of individuals, guaranteed by effective cross-border enforcement machinery. Will the AI Act become the next example of the Brussels effect, as Anu Bradford has labeled it, and would this be a good idea?
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| 10. |
- Chamberlain, Johanna, et al.
(författare)
-
The Relationship Between Damages and Administrative Fines in the EU General Data Protection Regulation
- 2019
-
Ingår i: SSRN Electronic Journal. - : Elsevier BV. - 1556-5068.
-
Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Two purposes of the GDPR are to provide effective remedies for ensuring extensive personal data rights and to change practices and policies of controllers and processors so that they become more aware of privacy protection. Article 58 GDPR lays down the investigative and corrective powers of the national supervisory authorities, such as issuing warnings or imposing new administrative fines. Article 79 GDPR states that every data subject whose rights according to the regulation have been infringed shall have access to an effective remedy. The two measures in focus here are those with the largest economic impact: Article 82 on damages and Article 83 on administrative fines. These articles target different areas and subjects – while the first has a compensatory purpose and is designed for use by individuals, the second has a preventive character and is implemented by Data Protection Authorities vis-á-vis controllers and processors. Considering these two profiles, an interesting question arises: Why are the provisions of Article 83 for imposing fines on companies and organisations so detailed, while the wording of Article 82 and hence the liability for controllers and processors is open to interpretation? What does this difference lead to in the application of the regulation, and more precisely, is it likely that the development in regards to administrative fines could spill over to the application of rules on damages?
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| 11. |
- Chamberlain, Johanna, 1989-, et al.
(författare)
-
The Relationship Between Damages and Administrative Fines in the EU General Data Protection Regulation
- 2020
-
Ingår i: Mississippi Law Journal. - Mississippi. - 0026-6280. ; 89:4, s. 667-696
-
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Two purposes of the GDPR are to provide effective remedies for ensuring extensive personal data rights and to change practices and policies of controllers and processors so that they become more aware of privacy protection. Article 58 GDPR lays down the investigative and corrective powers of the national supervisory authorities, such as issuing warnings or imposing new administrative fines. Article 79 GDPR states that every data subject whose rights according to the regulation have been infringed shall have access to an effective remedy. The two measures in focus here are those with the largest economic impact: Article 82 on damages and Article 83 on administrative fines. These articles target different areas and subjects – while the first has a compensatory purpose and is designed for use by individuals, the second has a preventive character and is implemented by Data Protection Authorities vis-á-vis controllers and processors. Considering these two profiles, an interesting question arises: Why are the provisions of Article 83 for imposing fines on companies and organisations so detailed, while the wording of Article 82 and hence the liability for controllers and processors is open to interpretation? What does this difference lead to in the application of the regulation, and more precisely, is it likely that the development in regards to administrative fines could spill over to the application of rules on damages?
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| 12. |
- Chamberlain, Johanna, 1989-, et al.
(författare)
-
The Swedish Understanding of Privacy as a Fundamental Right in a Comparative Perspective – : Overview and Possibilities
- 2019. - 1
-
Ingår i: Comparative Perspectives on Privacy in an Internet Era. - Durham, NC : Carolina Academic Press. - 9781531009571 ; , s. 85-112
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Swedish discussions regarding the right to privacy are, in many ways, still at an early stage. In the midst of the complex process of getting to know the history, scope and legal consequences of privacy in Sweden, it is worth beginning slowly in order to appreciate differences between the privacy discourse in the EU and the discourse in the US. When working in a ’new’ field that is highly dependent on international texts, cases and materials, it is tempting to import arguments from other countries or systems. However, are we always talking about the same thing? In this paper, a general comparison is made between the right to privacy as developed within the European Union, and the American concept of the right to privacy. The goal is to begin a discussion on what this European fundamental right means, and to contrast it with the American, civil liberty concept – or perhaps fundamental right? In particular, we wish to see how the right to privacy functions in these different legal settings, and thereby to see how a better understanding of these two systems can help lead us to new insights in a Swedish legal context. The survey will begin with a discussion of the terminology used in the field, and a brief background of the right to privacy as developed thus far in Sweden.
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| 13. |
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| 14. |
- Dahlqvist, Julia, et al.
(författare)
-
Swedish Constitutional Response to the Coronavirus Crisis The Odd One Out?
- 2022
-
Ingår i: Pandemocracy in Europe. - Oxford : Bloomsburry publishing. - 9781509946365 ; , s. 135-154
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- The Swedish response to the coronavirus crisis has, at least initially, deviated from those in most other comparable countries and the Swedish strategy has gained attention worldwide. Only a few binding restrictive measures have been enacted and the Swedish model has, at least initially, been to mostly rely on informal and voluntary measures based on recommendations from the Public Health Agency (PHA). No lockdowns, as in mass quarantines or stay-at-home orders, or mandatory mask wearing have, as of February 2021, been introduced. However, during the ‘second wave’ of the pandemic, in Autumn 2020, the strategy somewhat changed and new restrictions have gradually been introduced. The development brought to light the need for new legislative tools and at the beginning of 2021 the Swedish Parliament, the Riksdag, enacted the temporary COVID-19 Act, delegating further powers to the Government. It may be submitted that the constitutional framework, in essence, has been respected. However, the strong position of Swedish public authorities in the area of communicable diseases, together with the vast delegation of powers to the Government, has in practice impacted on the traditional division of tasks for implementing policies in a manner unprecedented in modern Swedish constitutional history.
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| 15. |
- Dane, Louise, 1986-
(författare)
-
Den reglerade invandringen och barnets bästa : Barns rätt till familjeliv och privatliv enligt barnkonventionen, Europakonventionen, EU-rätten och svensk utlänningslagstiftning
- 2019
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis analyses the principle of the best interests of the child and the right to private and family life in relation to the societal interest of controlling immigration. The aim of the thesis is to contribute to ensuring more predictable and transparent legislation and decision-making.States, generally, have the right to control immigration. At the same time, a child’s right to family and private life is a human right – regulated, for example, by the UN Convention of the Rights of the Child, the European Convention on Human Rights and the EU Charter of Fundamental Rights. This means that states can only restrict these rights when such interference is justified. In migration cases concerning private and family life, an assessment therefore must be made as to whether a decision to refuse residence is proportional. When a child is affected by such a decision, the child's best interests must be carefully assessed and taken into consideration. This thesis examines what is legally required of a correct decision in migration cases concerning a child’s right to private and family life. Particular attention is given to those requirements imposed on lawmakers and legal actors by the public law principles of legality, objectivity and proportionality, as well as the duty to give reasoned decisions. This thesis charts the development and foundations of Swedish migration law including those requirements arising from EU and public international law. The focus thereafter is more specifically on the assessments made balancing the interests of children's rights and immigration control.Whether a restriction of the right to private and family life is proportionate is determined by the specific circumstances in the individual case. However, the research conducted demonstrates that there is a lack of guidance concerning which circumstances Swedish legal actors can and should consider, as well as the weight that should be attributed to the considered circumstances. The interest of immigration control is particularly ambiguous. The thesis identifies four types of circumstances that the Swedish lawmaker appears to suggest legal actors consider within this interest; (a) public order and security, (b) maintenance and enforcement of immigration control, (c) national economic well-being (including number of migrants), and (d) protection of the rights and freedoms of others.Lack of clear guidance is problematic, particularly in light of the principles of legality, objectivity and proportionality, as the outcomes of cases depend on what individual legal actors choose to consider. Vague guidance on what constitutes relevant circumstances may also contribute to the problem of poorly formulated decisions as identified in previous research. In order to increase the probability of legal actors rendering more correct decisions – on the basis of applicable law – a five-step model is presented: (1) identifying private and/or family life (2) identifying the child's best interests (3) identifying the underlying motivations linked to the interest of immigration control (4) listing the arguments for and against granting residence in Sweden and (5) determining which interests should prevail.The thesis concludes with a number of recommendations aimed mainly at lawmakers that could contribute to strengthening children's rights and increasing adherence to the rule of law in migration cases concerning children's right to private and family life.
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| 16. |
- Eklund, Agnes, et al.
(författare)
-
Enskilda och EU-rättens genomförande
- 2015
-
Ingår i: De lege 2015: Europarätten – 20 år i Sverige. - : Iustus förlag.
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 17. |
- Fåhraeus, David, et al.
(författare)
-
The European Health Data Space : Challenges and Opportunities
- 2024
-
Rapport (övrigt vetenskapligt/konstnärligt)abstract
- In her 2020 State of the Union address, the European Commission President Ursula von der Leyen announced a new legislative proposal to create a European Health Data Space. Its aim is to make electronic health data accessible in order to support healthcare delivery, health research, innovation, effective policymaking and regulation, and personalised medicine. This European Policy Analysis examines the Commission’s proposal and its implications for patients, healthcare providers, market actors and national administrations.The analysis shows that the Commission’s Proposal has significant potential benefits for a wide range of stakeholders. However, concerns still remain regarding aspects such as the empowerment of individuals in relation to their data, adjustments that will need to be made by the healthcare sector, incentives for innovation, and trust in EU governance. At the time of writing, the European Parliament and the Council have adopted their negotiating positions. However, a number of changes are likely to be introduced before the Commission’s Proposal is agreed and can be implemented in the Member States.
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| 18. |
-
GDPR and Biobanking : Individual Rights, Public Interest and Research Regulation across Europe
- 2021
-
Samlingsverk (redaktörskap) (refereegranskat)abstract
- This open access book focuses on the discrepancies in biobank research regulations that are among the most significant hurdles to effective research collaboration. The General Data Protection Regulation (GDPR) has established stringent requirements for the processing of health and genetic data, while simultaneously allowing considerable multi-level exceptions for the purposes of scientific research. In addition to directly applicable exceptions, the GDPR places the regulatory responsibility for further defining how the Member States strike a balance between the individuals' rights and the public interest in research within their national legal orders. Since Member States' approaches to the trade-off between data subjects' rights on the one hand, and appropriate safeguards on the other, differ according to their ethical and legal traditions, their data protection requirements for research also differ considerably.This study takes a comprehensive approach to determine how the GDPR affects regulatory regimes on the use of personal data in biobanking research, with a particular focus on the balance between individuals' rights, public interest and scientific research. In this regard, it has two main goals: first, to scrutinize the GDPR research regime, its objective and constitutive elements, the impact it has on biobanking, and its role in a changing EU landscape post-Brexit; and second, to examine how various exceptions have been operationalized nationally, and what challenges and opportunities this diversification entails. The book not only captures the complexity GDPR creates for biobanking, but also sheds light on various approaches to tackling the corresponding challenges. It offers the first comprehensive analysis of GDPR for biobanking, and the most up-to-date overview of the national biobank regulatory frameworks in Europe.
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| 19. |
- Gholami, Ali, et al.
(författare)
-
Design and Implementation of the advanced cloud privacy threat modeling
- 2016
-
Ingår i: International Journal of Network Security & Its Applications. - 0975-2307 .- 0974-9330. ; 8:2, s. 103-122
-
Tidskriftsartikel (refereegranskat)abstract
- Privacy-preservation for sensitive data has become a challenging issue in cloud computing. Threat modeling as a part of requirements engineering in secure software development provides a structured approach for identifying attacks and proposing countermeasures against the exploitation of vulnerabilities in a system. This paper describes an extension of Cloud Privacy Threat Modeling (CPTM) methodology for privacy threat modeling in relation to processing sensitive data in cloud computing environments. It describes the modeling methodology that involved applying Method Engineering to specify characteristics of a cloud privacy threat modeling methodology, different steps in the proposed methodology and corresponding products. In addition, a case study has been implemented as a proof of concept to demonstrate the usability of the proposed methodology. We believe that the extended methodology facilitates the application of a privacy-preserving cloud software development approach from requirements engineering to design.
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| 20. |
- Gholami, Ali, et al.
(författare)
-
Privacy Threat Modeling for Emerging BiobankClouds
- 2014
-
Ingår i: Procedia Computer Science. - : Elsevier. ; 37, s. 489-496
-
Konferensbidrag (refereegranskat)abstract
- There is an increased amount of data produced by next generation sequencing (NGS) machines which demand scalable storage and analysis of genomic data. In order to cope with this huge amount of information, many biobanks are interested in cloud computing capabilities such as on-demand elasticity of computing power and storage capacity. There are several security and privacy requirements mandated by personal data protection legislation which hinder biobanks from migrating big data generated by the NGS machines. This paper describes the privacy requirements of platform-as-service BiobankClouds according to the European Data Protection Directive (DPD). It identifies several key privacy threats which leave BiobankClouds vulnerable to an attack. This study benefits health-care application designers in the requirement elicitation cycle when building privacy-preserving BiobankCloud platforms.
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| 21. |
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Governing with Public Agencies : The Development of a Global Administrative Space and the Creation of a New Role for Public Agencies
- 2022
-
Samlingsverk (redaktörskap) (övrigt vetenskapligt/konstnärligt)abstract
- The theme of this anthology is the new role of public agencies within what we have termed a “global administrative space,” a space created through increased collaborations and interconnectedness between global, regional and national public and private actors. Within this space policies are adopted, principles developed, and even law is at times enacted. The role and functions of public agencies have hereby undergone fundamental changes. Public agencies at global, regional and national levels act as stand-in legislators in areas within fundamental rights re- gimes, regulatory frameworks for sector specific areas (financial systems, pharma- ceutical regulations, data protection) as well as fishing and agricultural industries, to name only a few. Also private entities partake, as well as other public actors, such as judicial actors of different kinds. The decision-making capacity, procedures and out-comes vary, as well as the degree of ‘globalisation’. The global administrative space can thereby be identified as either connected to or separated from the national constitutional arenas. The question on the role of the public agencies within the global administrative space is taken on with an exploratory approach, in order to operationalize the concept. The question will be addressed from an international, regional and national level, providing different interpreta- tions in different contexts. Some are projecting future applications, whilst others are taking stakes of current operations.
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| 22. |
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| 23. |
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| 24. |
- Grahn-Farley, Maria, et al.
(författare)
-
Introduction
- 2022
-
Ingår i: Governing with Public Agencies. - Stockholm : Poseidon Förlag. - 9789198538748 - 9789198538755 ; , s. 11-16
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 25. |
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| 26. |
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| 27. |
-
Information and law in transition : freedom of speech, the internet, privacy and democracy in the 21st century
- 2015
-
Proceedings (redaktörskap) (refereegranskat)abstract
- In this book we have gathered a number of prominent scholars who analyze the developments of information and law from their respective perspective. The papers were first presented at a colloquium at the Faculty of Law, Uppsala University in September 2014.The book is divided into two parts. The first part of the book is comprised of the contributions having a more general scope; developments within a new landscape, regulatory matters and questions relating to security, technology and information. The second part sets information and law in contexts and focuses towards more specific matters; fundamental rights in a new context, issues relating to the right to be forgotten and finally, welfare, health and research.The Internet and other information and communication technologies have created exciting new possibilities for connecting individuals across borders and continents. The new technologies also raise significant legal, ethical and political concerns. The Internet has thus permitted the instantaneous dissemination of information as well as created an entirely new arena for hate speech. New information and communication technologies have made possible the creation of large registries and databases with the potential to lead to effective cross-border law enforcement, foster important new research as well as unwarranted mapping of individual persons’ private life. How society responds to this can have an impact on how we perceive democracy, and the realization of the rule of law, as well as on transparency and legitimacy in communication between individuals and states. It also affects the relationship between the public sphere and the individual.
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| 28. |
- Johansson, Caroline, 1982-
(författare)
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Tjänstepensionen möter EU-rätten : Om relationen mellan svenska kollektivavtal och den inre marknaden
- 2018
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The occupational pension constitutes an important part of the total pension for most employees in Sweden. The large part of the occupational pension plans are decided through collective agreement on confederate level and the social partners are given a large scope regarding contributions, requirements and administration. The main focus of the thesis regards the relation between the Swedish collectively bargained, occupational pension and EU internal market law. The aim is to describe how they interrelate and identify tensions between the two. Before that, the Swedish occupational pension is examined. First, a historical account is given regarding both the occupational and the public pension. Thereafter, the occupational pension’s modern structure is analysed, set out from the pension plan for white collar workers in the private sector. The occupational pension then serves as the basis for the analysis of the EU internal market law. This part contains one chapter on competition law and collective agreements, one chapter on the free movement of financial services and one chapter on the free movement of workers and occupational pension rights. To conclude, the thesis connects to overarching questions regarding the scope for different welfare solutions within the EU.
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| 29. |
- Julén Votinius, Jenny, et al.
(författare)
-
Rule of Law Discourses in Swedish Labour Law
- 2023
-
Ingår i: Rule of Law : Responses to challenges to the rule of law in Nordic Law - Responses to challenges to the rule of law in Nordic Law. - 0085-5944. - 9789185142828 ; 69, s. 377-377
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Bokkapitel (refereegranskat)
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| 30. |
- Klingström, Tomas, et al.
(författare)
-
Legal & ethical compliance when sharing biospecimen
- 2018
-
Ingår i: Briefings in Functional Genomics & Proteomics. - Oxford : Oxford University Press. - 2041-2649 .- 2041-2657. ; 17:1, s. 1-7
-
Forskningsöversikt (refereegranskat)abstract
- When obtaining samples from biobanks, resolving ethical and legal concerns is a time-consuming task where researchers need to balance the needs of privacy, trust and scientific progress. The Biobanking and Biomolecular Resources Research Infrastructure-large Prospective Cohorts project has resolved numerous such issues through intense ommunication between involved researchers and experts in its mission to unite large rospective study sets in Europe. To facilitate efficient communication, it is useful for onexperts to have an at least basic understanding of the regulatory systemformanaging biological samples. Laws regulating research oversight are based on national law and normally share core principles founded on international charters. In interview studies among donors, chief concerns are privacy, efficient sample utilization and access to information generated fromtheir samples. Despite a lack of clear evidence regarding which concern takes precedence, scientific as well as public discourse has largely focused on privacy concerns and the right of donors to control the usage of their samples. It is therefore important to roactively deal with ethical and legal issues to avoid complications that delay or prevent samples from being accessed. To help biobank professionals avoid making unnecessary mistakes, we have developed this basic primer covering the relationship between ethics and law, the concept of informed consent and considerations for returning findings to donors.
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| 31. |
- Klingström, Tomas, et al.
(författare)
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Supporting the Development of Biobanks in Low and Medium Income Countries
- 2016
-
Ingår i: 2016 IST-AFRICA WEEK CONFERENCE. - 9781905824557
-
Konferensbidrag (refereegranskat)abstract
- Biobanks are an organized collection of biological material and associated data. They are a fundamental resource for life science research and contribute to the development of pharmaceutical drugs, diagnostic markers and to a deeper understanding of the genetics that regulate the development of all life on earth. Biobanks are well established in High Income Countries (HIC) and are rapidly emerging in Low and Middle Income Countries (LMIC). Surveys among biobanks operating in a LMIC setting indicate that limited resources and short term funding tied to specific projects threaten the sustainability of the biobanks. Fit-for-purpose biobanks targeting major societal challenges such as HIV and Malaria provide an excellent basis for integrating biobanks with the available research communities in LMIC regions. But to become sustainable for the future it is important that biobanks become an integrated part of local research communities. To achieve this, the cost of operating biobanks must be lowered, templates must be developed to support local ethics committees and researchers must be given the opportunity to build experience in successfully operating biobank based research projects. The B3Africa consortium is based on these conclusions and set up to support biobank based research by creating a cost efficient Laboratory Information Management System (LIMS) for developing biobanks and also contribute to the training and capacity building in the local research community. The technical platform called the eB3Kit is open source and consists of a LIMS and a bioinformatics module based on the eBiokit that allow researchers to take control over the analysis of their own data. Along with the technical platform the consortium will also contribute training and support for the associated infrastructures necessary to regulate the ethical and legal implications of biobank based research.
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| 32. |
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| 33. |
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| 34. |
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| 35. |
- Lind, Anna-Sara, 1977-, et al.
(författare)
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Förvaltningen och EU:s dataskydd
- 2020
-
Ingår i: Den svenska förvaltningsmodellen. - Stockholm : Jure AB. - 9789186645144 ; , s. 258-285
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 36. |
- Lind, Anna-Sara, 1977-, et al.
(författare)
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Introducing 250 years of transparency
- 2017
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Ingår i: Transparency in the future. - : Ragulka förlag. - 9789185333752 ; , s. 9-17
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 37. |
- Lind, Anna-Sara, 1976-, et al.
(författare)
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Introduction
- 2013
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Ingår i: Administrative Law Beyond the State - Nordic Perspectives. - Stockholm : Liber. - 9789147111244 ; , s. 12-21
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 38. |
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| 39. |
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| 40. |
- Mattsson, Titti, et al.
(författare)
-
Socialtjänstens barnavårds-utredningar i privat regi
- 2019
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Ingår i: Festskrift till Wiweka Warnling Conradson. ; , s. 251-251
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Mycket forskning inom olika vetenskapsområden har länge haft fokus på socialtjänstens insatser för barn i olika avseenden och även på privatiseringen av verkstäligheten av vården. Det saknas däremot studier som fokuserar på förekomsten av privata konsulter som genomför barnavårdsutredningar. Det innebär också att det idag är oklart vilka konsekvenser en sådan förändring innebär för socialtjänstens professionella arbete med barnavårdsutredningar, personalens arbetsmiljö, rätts säkerheten i beslutsprocessen och de beslut om insatser som fattas för barn och ungdomar. Syftet med denna artikel är att med utgångspunkt i nuvarande reglering beskriva några rättsliga förutsättningar för denna alltmer förekommande kommunala praktik.
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| 41. |
- Nordberg, Ana, et al.
(författare)
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Biobank and Biomedical Research: Responsibilities of Controllers and Processors under the EU General Data Protection Regulation
- 2021
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Ingår i: GDPR and biobanking : Individual rights, public interest and research regulation across Europe - Individual rights, public interest and research regulation across Europe. - Cham : Springer International Publishing. - 9783030493882 - 9783030493875 ; , s. 61-89
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Bokkapitel (refereegranskat)abstract
- Biobanks are essential infrastructures in current health and biomedical research. Advanced scientific research increasingly relies on processing and correlating large amounts of genetic, clinical and behavioural data. These data are particularly sensitive in nature and the risk for privacy invasion and misuse is high. The EU General Data Protection Regulation (GDPR) developed and increased harmonization, resulting in a framework defining specific duties and obligations of entities processing personal data – controllers and processors. Biobanks, in the exercise of their functions assume the role of controllers and/or processors and as such need to comply with a number of complex rules. This chapter analyses these rules, in light of Article 89 GDPR, which creates safeguards and derrogations relating to processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. It identifies key compliance challenges faced by biobanks as data controllers and processors, such as determining whether the GDPR is applicable and its intersection with other regulations; when should a biobank be considered controller and processor; what are the main duties of biobanks as data controllers and processors and options for compliance.
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| 42. |
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Ny förvaltningslag : Temanummer Förvaltningsrättslig tidskrift 3 '18
- 2018
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Samlingsverk (redaktörskap) (refereegranskat)abstract
- I detta temanummer av Förvaltningsrättslig tidskrift har vi samlat bidrag som analyserar 2017 års FL från fyra perspektiv: nyheter i förvaltningslagen, uppdateringar i förvaltningslagen, utanför förvaltningslagen och förvaltningslagen och dess förhållande till andra lagar. Temanumret avslutas med en internationell utblick.
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| 43. |
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| 44. |
- Pagil, Sophie, et al.
(författare)
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Etik som rättsligt verktyg? Etikprövning av forskning som rättslig skyddsåtgärd för enskilda
- 2022
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Ingår i: Nordisk socialrättslig tidskrift. - : Stockholm Law Faculty's Trust Fund for Publications. - 2000-6500. ; 31-32, s. 39-70
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Tidskriftsartikel (refereegranskat)abstract
- Ethical review has in recent decades played an increasingly prominent role in the research community. In addition to the main function of the ethics review – to assess the benefits and risks of a planned research project – a further function has become increasingly important, namely ethical review as a tool for legal protection. International, European and Swedish fundamental rights documents entail a right to privacy (both physical and personal integrity) and the right to data protection. There are two internationally recognized safeguards to implement these rights in the field of scientific research: the requirement for informed consent and ethical review. The article analyzes the legal structure for ethical review in Swedish law, taking its departure in a matter decided by the Ethics Review Authority and the Board of Appeal for Ethics Review in 2020, where a research project was considered to fall outside the scope of the Ethics Review Act, after a narrow interpretation of relevant legal concepts. Based on an analysis of the phenomenon of juridification, the question is asked whether the Swedish ethics review is designed to provide adequate access to ethical review for research, while at the same time providing effective legal protection for research participants. The conclusion drawn is that the ethical review ought to be handled as an ethical tool, rather than a legal one. Focus ought to be placed on the ethical balancing of the benefits of a planned research project against the welfare of the research participants in the individual case, rather than a review of legal particularities.
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| 45. |
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| 46. |
- Persson, Mats, et al.
(författare)
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Straffrätt
- 2017
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Ingår i: Svensk juridik. - Stockholm : Wolters Kluwer. - 9789139207900 ; , s. 565-624
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Svensk juridik är en grundläggande lärobok i juridik där författarna på ett modernt, pedagogiskt och överskådligt sätt beskriver stora delar av det svenska rättssystemet. Boken går förhållandevis djupt för att vara en grundläggande lärobok, samtidigt som författarna lagt ner mycket arbete på att anpassa texten till modernt språkbruk. En mängd exempel och förklarande skisser gör det komplicerade mer lättillgängligt. Författarnas ambition är inte endast att läsaren ska få förståelse för juridiken utan även vinna insikt om hur juridiken används och fungerar i praktiken.
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| 47. |
- Persson, Mats, 1962, et al.
(författare)
-
Svensk juridik
- 2023
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Bok (övrigt vetenskapligt/konstnärligt)abstract
- Svensk juridik en grundläggande lärobok i juridik där författarna på ett modernt, pedagogiskt och överskådligt sätt beskriver stora delar av det svenska rättssystemet. Boken går förhållandevis djupt för att vara en grundläggande lärobok, samtidigt som författarna lagt ner mycket arbete på att anpassa texten till modernt språkbruk. En mängd exempel och förklarande skisser gör det komplicerade mer lättillgängligt. Författarnas ambition är inte endast att läsaren ska få förståelse för juridiken utan även vinna insikt om hur juridiken används och fungerar i praktiken.
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| 48. |
- Persson, Mats, et al.
(författare)
-
Svensk juridik
- 2017
-
Bok (övrigt vetenskapligt/konstnärligt)abstract
- Svensk juridik är en grundläggande lärobok i juridik där författarna på ett modernt, pedagogiskt och överskådligt sätt beskriver stora delar av det svenska rättssystemet. Boken går förhållandevis djupt för att vara en grundläggande lärobok, samtidigt som författarna lagt ner mycket arbete på att anpassa texten till modernt språkbruk. En mängd exempel och förklarande skisser gör det komplicerade mer lättillgängligt. Författarnas ambition är inte endast att läsaren ska få förståelse för juridiken utan även vinna insikt om hur juridiken används och fungerar i praktiken.
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| 49. |
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| 50. |
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