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  • 51.
    Slokenberga, Santa
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Lund Univ, Fac Law, Lund, Sweden.
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Stockholm Univ, Fac Law, Stockholm, Sweden.
    Niringiye, Rachel
    Aegis Advocates, Kampala, Uganda.
    Croxton, Talishiea
    Univ Maryland, Baltimore, MD 21201 USA.
    Swanepoel, Carmen
    Stellenbosch Univ, Fac Med & Hlth Sci, Natl Hlth Lab Serv, Div Heamatol,Dept Pathol, Stellenbosch, South Africa.
    Okal, June
    Univ Nairobi, Nairobi, Kenya.
    EU data transfer rules and African legal realities: is data exchange for biobank research realistic?2019In: International Data Privacy Law, ISSN 2044-3994, E-ISSN 2044-4001, Vol. 9, no 1, p. 30-48Article in journal (Refereed)
    Abstract [en]

    Key Points

    • To effectively collaborate in biobanking and build capacity in low and middle-income countries, data transfer from European Union (EU) Member States to states in Africa is crucial.

    • Although under the General Data Protection Regulation (GDPR) avenues for data transfer exist, the ones feasible for transcontinental data exchange for biobank research rely on EU enforcement which in essence means limited oversight possibilities and, consequently, considerable risks to the EU data subject’s privacy.

    • To ensure effective data protection for data subjects in biobanking, raising the data protection bar in data recipient countries is crucial. Although Kenya, Nigeria, South Africa, and Uganda have taken considerable steps towards developing data protection frameworks, only that of South Africa and Nigeria’s Protection of Personal Information Bill seem to be such to meet the protection level set out by the GDPR. The legislative initiatives in Kenya and Uganda require revisions to ensure that protection of privacy is not undermined when data are being sent to these countries.

    • Currently, considerable responsibility is placed in the hands of the legislatures in the countries of concern—and notably in Kenya, and Uganda—to set foundations for ending research and research integrity-harming practices. In Nigeria, these foundations are defined in the Protection of Personal Information Bill, but not adopted yet. South Africa, however, has taken a big step towards building routes for genuine biobank capacity-building in the country and collaboration in that regard.

  • 52.
    Slokenberga, Santa
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Tauriņa, Liene Elizabete
    Ārstniecība cilvēka dzīves nogalē2022In: Medicīnas tiesības: Otrais papildinātais izdevums / [ed] Agnese Gusarova; Aldis Lieljuksis; Aleksandrs Potaičuks; Laura Šāberte; Santa Slokenberga; Solvita Olsena; Ronalds Rožkalns; Liene Elizabete Tauriņa; Ilze Vilka; Niāra Zālīte; Anita Slokenberga; Karina Palkova; Laura Kadile; Olga Šķerberga; Signe Mežinska, Tiesu namu aģentūra , 2022, 2, p. 485-514Chapter in book (Other academic)
  • 53.
    Slokenberga, Santa
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Tzortzatou, OlgaAcademy of Athens, Biomedical Research Foundation, Athens, Greece.Reichel, JaneFaculty of Law, Stockholm University, Stockholm, Sweden.
    GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe2021Collection (editor) (Other academic)
    Abstract [en]

    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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  • 54.
    Staunton, Ciara
    et al.
    Middlesex Univ, Sch Law, London, England;EURAC, Ctr Biomed, Bolzano, Italy.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Lund Univ, Fac Law, Lund, Sweden.
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. EURAC, Ctr Biomed, Bolzano, Italy.
    The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks2019In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 27, no 8, p. 1159-1167Article in journal (Refereed)
    Abstract [en]

    The General Data Protection Regulation (GDPR) came into force in May 2018. The aspiration of providing for a high level of protection to individuals' personal data risked placing considerable constraints on scientific research, which was contrary to various research traditions across the EU. Therefore, along with the set of carefully outlined data subjects' rights, the GDPR provides for a two-level framework to enable derogations from these rights when scientific research is concerned. First, by directly invoking provisions of the GDPR on a condition that safeguards that must include 'technical and organisational measures' are in place and second, through the Member State law. Although these derogations are allowed in the name of scientific research, they can simultaneously be challenging in light of the ethical requirements and wellestablished standards in biobanking that have been set forth in various research-related soft legal tools, international treaties and other legal instruments. In this article, we review such soft legal tools, international treaties and other legal instruments that regulate the use of health research data. We report on the results of this review, and analyse the rights contained within the GDPR and Article 89 of the GDPR vis-a-vis these instruments. These instruments were also reviewed to provide guidance on possible safeguards that should be followed when implementing any derogations. To conclude, we will offer some commentary on limits of the derogations under the GDPR and appropriate safeguards to ensure compliance with standard ethical requirements.

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  • 55.
    Staunton, Ciara
    et al.
    Eurac Res, Inst Biomed, Bolzano, Italy.;Middlesex Univ, Sch Law, London, England..
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Parziale, Andrea
    Eurac Res, Inst Biomed, Bolzano, Italy.;Luiss Guido Carli Univ, Dept Business & Management, Rome, Italy..
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Eurac Res, Inst Biomed, Bolzano, Italy..
    Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research2022In: Frontiers in Genetics, E-ISSN 1664-8021, Vol. 13, article id 719317Article, review/survey (Refereed)
    Abstract [en]

    The collection and use of biological samples and data for genetic research, or for storage in a biobank or databank for future research, impacts upon many fundamental rights, including the right to dignity, the right to private and family life, the right to protection of personal data, the right to freedom of arts and sciences, and the right to non-discrimination. The use of genetic data and other health-related data in this context must be used in a manner that is rooted in human rights. Owing in part to the General Data Protection Regulation (GDPR) coming into force, the right to the protection of personal data in the context of scientific research has been afforded increasing attention. The GDPR gives effect to the right to data protection, but states that this right must be balanced against other rights and interests. The GDPR applies to all personal data, with specific attention to special categories of data, that includes health and genetic data. The collection, access to, and sharing of such data must comply with the GDPR, and therefore directly impacts the use of such data in research. The GDPR does provide for several derogations and exemptions for research from many of the strict processing requirements. Such derogations are permitted only if there are appropriate safeguards in place. Article 89 states that to be appropriate, safeguards must be "in accordance" with the GDPR "for the rights and freedoms of the data subject". In particular, those safeguards must ensure "respect for the principle of data minimisation". Despite the importance of safeguards, the GDPR is silent as to the specific measures that may be adopted to meet these requirements. This paper considers Article 89 and explores safeguards that may be deemed appropriate in the context of biobanks, databanks, and genetic research.

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  • 56.
    Taurina, Liene
    et al.
    Riga Stradins University.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Ārstniecība cilvēka dzīves nogalē un nāves tiesiskie aspekti: (Death and dying)2015In: Medicīnas Tiesības, Riga: Tiesu Namu Aģentūra , 2015, p. 639-675Chapter in book (Other academic)
  • 57. Zillen, Kavot
    et al.
    Mattsson, TittiSlokenberga, SantaUppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Medicinsk rätt2020Collection (editor) (Other academic)
  • 58.
    Zillén, Kavot
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Garland, Jameson
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    The Rights of Children in Biomedicine: Challenges posed by scientific advances and uncertainties2017Report (Other academic)
    Abstract [en]

    The Committee on Bioethics of the Council of Europe commissioned this study to identify potential areas of heightened concern for the rights of children that may be unfavorably affected by scientific advances and uncertainties in biomedicine. This report is the result of that study. It provides substantive illustrations of the diversity of problems generated by biomedical developments, including the expanded use of certain biomedical procedures, emerging technologies, and innovative therapies. It also addresses uncertain risks to children through the continuation of longstanding biomedical practices that lack sufficient scientific support. Because considerable legal protections have been developed for biomedical research and continue to be debated in great depth, this report focuses more broadly on biomedicine as a whole. The specific concern addressed here is not about the research process and regulation as such, but rather on how scientific advances and risk-laden practices reach children in biomedicine – whether through health care practices or in other biomedical settings. Mapping out the areas of concern for this report required not only identifying the technological advances and scientific challenges at stake but contemplating these challenges first and foremost from the perspective of the rights of children as class – formally collectively defined as persons from birth to age 18, unless they have attained majority status. Because a subsequent report will analyze the potential legal frameworks protecting children from the scientific risks and uncertainties identified here, this report identifies the challenges in protecting children relative to those rights that are commonly described in international human rights discourse, with only summary references to specific legal instruments in the report’s conclusions. The aim of the report is to demonstrate how the scientific risks and uncertainties illustrated here may affect the rights of children from birth through adolescence, in a variety of ways. Chapter 2 surveys differences in childhood development to illustrate why the lack of protection from scientific risks and uncertainty persists, in part because of limited understanding of the developmental differences and vulnerabilities of children at different phases of life. The report then expands on how many interventions may reach children at the earliest stages of their development, such as through assisted reproduction and other interventions in utero (Chapter 3) as well as in the field of genetics (Chapter 4). The report then addresses children who have been subjected to high-risk and controversial clinical practices, many of which lack sufficient scientific support regarding their safety. Among those children at risk are sexual or gender minority children (Chapter 5) and children diagnosed with serious physical and mental health needs (Chapter 6). The next chapters address two areas affecting critically ill children where considerable policy debate has taken place, but without sufficient regard to scientific advances and uncertainties, specifically in transplantation (Chapter 7) and end-of-life decisions (Chapter 8). In the final chapter, the report sets forth numerous rights of children in biomedicine that are currently at stake from scientific advances and uncertainties – not only the right to the highest attainable standard of health but rights protecting their physical and psychological integrity and their privacy and identity, as well as freedom from discrimination. The landscape of these rights is as vast and potentially complex as biomedicine. The report thus concludes that the biomedical controversies surveyed here signal a need for systemic, continuous and multidisciplinary oversight of these issues, as well as for many biomedical interventions that could not be covered here in depth. These matters cannot be left to biomedical expertise alone, but instead require vigilant oversight from human rights authorities and scholars with an understanding of these issues.

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  • 59.
    Zillén, Kavot
    et al.
    Stockholms universitet.
    Mattsson, Titti
    Lunds universitet.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Inledning2020In: Medicinsk rätt / [ed] Kavot Zillén, Titti Mattsson och Santa Slokenberga, Norstedts Juridik AB, 2020, p. 23-36Chapter in book (Other academic)
  • 60.
    Zillén, Kavot
    et al.
    Stockholms universitet.
    Mattsson, Titti
    Slokenberga, Santa
    Lunds universitet.
    Inledning2022In: Medicinsk rätt, Stockholm: Norstedts Juridik AB, 2022, 2, p. 23-38Chapter in book (Other academic)
  • 61.
    Zillén, Kavot
    et al.
    Stockholms universitet.
    Mattsson, TittiLunds universitet.Slokenberga, SantaLunds universitet.
    Medicinsk rätt2022Collection (editor) (Other academic)
    Abstract [sv]

    Området för medicin och hälsa skapar dagligen nyhetsuppslag rörande dess kvalitet, tillgång, ansvar och konsekvenser för människors liv. De frågor som behandlas inom den medicinska rätten ligger i gränslandet mellan medicin och juridik, där även etiska, sociala och policydimensioner spelar in. De medicinrättsliga reglerna berör och påverkar flera aktörer på området för hälsa och medicin, såsom hälso- och sjukvårdspersonal, vårdgivare, patienter, forskare och olika beslutsfattare på myndigheter.

    Medicinsk rätt behandlar vissa kärnområden inom den medicinskarätten, bl.a. följande:

    • Hälso- och sjukvårdens rättsliga ansvar och patientens ställning.

    • Hälso- och sjukvårdssekretess.

    • Psykiatrisk tvångsvård.

    • Smittskydd.

    • Läkemedelsrätt, det rättsliga området för genetiska ingrepp och klinisk forskning.

    Medicinsk rätt är en lärobok som riktar sig till juriststudenter och studenter inom området för medicin, vård och omsorg samt verksamma inom samma områden. Det är även en värdefull bok för andra som behöver en fördjupad kunskap om de rättsliga ramarna för svenskhälso- och sjukvård och annan medicinsk verksamhet.

    I denna andra upplaga av boken har grundkapitlen reviderats och fyra nya kapitel tillkommit som alla berör olika relevanta och aktuella delar av den medicinska rätten.

    Bokens författare har särskilda sakkunskaper inom området för medicinsk rätt, där många har gedigen forskningserfarenhet och/eller stor erfarenhet av juridiskt och praktiskt arbete inom området.

  • 62.
    Zillén, Kavot
    et al.
    Stockholms universitet.
    Mattsson, Titti
    Slokenberga, Santa
    Lunds universitet.
    Vid vägs ände: några nutida och framtida utmaningar för den medicinska rätten2022In: Medicinsk rätt / [ed] Kavot Zillén; Titti Mattsson; Santa Slokenberga, Stockholm: Norstedts Juridik AB, 2022, 2, p. 353-364Chapter in book (Other academic)
  • 63.
    Zillén, Kavot
    et al.
    Stockholms universitet.
    Mattsson, Titti
    Lunds universitet.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Vid vägs ände: några nutida och framtida utmaningar för den medicinska rätten2020In: Medicinsk rätt / [ed] Kavot Zillén, Titti Mattsson och Santa Slokenberga, Norstedts Juridik AB, 2020, p. 277-284Chapter in book (Other academic)
  • 64.
    Zillén, Kavot
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Medical Aid in dying in Quebec - legal considerations2014In: Journal of Medical Law and Ethics, ISSN 2213-5405, Vol. 2, no 4, p. 109-121Article in journal (Refereed)
    Abstract [en]

    Currently, Quebec is the only province in Canada, which has taken a decision on legalizing euthanasia and physician assisted suicide. In Quebec euthanasia and physician assisted suicide are labelled as medical aid in dying and perceived as a part of healthcare. However, in Canada, at the federal level, euthanasia and physician assisted suicide remain punishable under the Canadian Criminal Code.

    This article examines Quebec’s legal approach to medical aid in dying, highlights some of the legal challenges, and discusses the need to handle them. The authors first provide a brief background of the euthanasia and assisted dying debate in Canada and particularly in Quebec. Further, they explain the concept of medical aid in dying and analyse the criteria for accessing it. Then they move on to analysing the constitutional legality of the Bill 52, an Act respecting end-of-life care allowing for medical aid in dying and possible legal consequences a physician might face if medical aid in dying is provided. 

12 51 - 64 of 64
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