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  • 1.
    Garland, Jameson
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Protecting the Rights of Children with Intersex Conditions from Nonconsensual Gender-Conforming Medical Interventions: The View from Europe2018In: Medical Law Review, ISSN 0967-0742, E-ISSN 1464-3790Article in journal (Refereed)
    Abstract [en]

    Nonconsensual gender-conforming interventions on children with intersex conditions have recently come under sharp criticism from human rights authorities within the United Nations, the Council of Europe, and the European Union, which have identified these interventions as violating children’s rights to bodily integrity, privacy, and protection from violence, torture, and degrading treatment. Responding largely to requests for intervention from nongovernmental organizations, these authorities have called upon nations to reform their legal frameworks, both to prevent these rights violations and to redress them. To date, however, few nations have endeavored to prohibit nonconsensual gender-conforming procedures on children with intersex conditions, and none have enacted significant reforms of their frameworks to redress rights violations. This particular ‘compliance gap’ between human rights recommendations and law reform stems from a failure of national legal orders to formally recognize the scope of rights that are threatened by nonconsensual gender-conforming interventions—rights that are well-established as part of states’ positive obligations to prevent physical and psychological harm to children. This article, therefore, analyzes the nature of the rights at stake and the importance of reporting human rights violations to generate direct calls for reform wherever violations occur. The article further analyzes how developments in Europe may have special significance for legal framework reforms—particularly if they facilitate judicial actions against national authorities through the European Convention of Human Rights, which may serve as a model for litigation elsewhere.

  • 2. Kalokairinou, L
    et al.
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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.
    Fisher, E
    Flatscher-Thöni, M
    Hartlev, M
    van Hellemondt, R
    Juškevičius, J
    Kapelenska-Pregowska, J
    Kováč, P
    Lovrečić, L
    Nys, H
    de Paor, A
    Phillips, A
    Prudil, L
    Rial-Sebbag, E
    Romeo Casabona, CM
    Sándor, J
    Schuster, A
    Soini, S
    Søvig, KH
    Stoffel, D
    Titma, T
    Trokanas, R
    Borry, P
    Legislation of direct-to-consumer genetic testing in Europe:: a fragmented regulatory landscape2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 117-132Article, review/survey (Refereed)
    Abstract [en]

    Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, the Netherlands and the United Kingdom. Emphasis is placed on provisions relating to medical supervision, genetic counselling and informed consent. Our results indicate that currently there is a wide spectrum of laws regarding genetic testing in Europe. There are countries (e.g. France and Germany) which essentially ban DTC genetic testing, while in others (e.g. Luxembourg and Poland) DTC genetic testing may only be restricted by general laws, usually regarding health care services and patients’ rights.

  • 3.
    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; Riga Stradins Univ, Fac Law, Riga, Latvia.
    Biobanking between the EU and Third Countries - Can Data Sharing Be Facilitated via Soft Regulatory Tools?2018In: European Journal of Health Law, ISSN 0929-0273, E-ISSN 1571-8093, Vol. 25, no 5, p. 517-536Article in journal (Refereed)
    Abstract [en]

    In biobanking, collaboration and data sharing contribute to building genomic research capacity, and have the potential to further scientific advances that ultimately can result in advances in clinical care. However, in the absence of common applicable legal frameworks that enable collaboration, capacity building is hindered. With the applicability of the General Data Protection Regulation, the obstacles to data sharing which involve export of data from European Union Member States to third countries are expected to grow, rendering the collaboration between the EU and third countries even more challenging. This article examines how, if at all, data sharing in biobank research between the EU and third countries could be facilitated via the use of soft regulatory tools. It argues that although the existing soft tools might not in itself be suitable for meeting all the GDPR requirements, they could be the basis on which to raise the area-specific data protection bar globally.

  • 4.
    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.
    Book review - T.K. Hervey, C.A. Young and L.E. Bishop (eds.) Research Handbook on EU Health Law and Policy (Cheltenham: Edward Elgar Publishing, 2017), ISBN 978-1785364716, 592 pp.2018In: European Journal of Health Law, ISSN 0929-0273, E-ISSN 1571-8093, Vol. 25, no 3, p. 355-360Article, book review (Other academic)
  • 5.
    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. Riga Stradins University, Latvia.
    Country report: an overview of animal protection in Latvia2017In: Scritti su etica e legislazione medica e veterinaria / [ed] Il comitato scientifico del Progetto, Bari: Cacucci Editore , 2017, p. 149-158Chapter in book (Other academic)
  • 6.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Direct-to-consumer Genetic Testing: Changes in the EU Regulatory Landscape2015In: European Journal of Health Law, ISSN 0929-0273, E-ISSN 1571-8093, Vol. 22, p. 463-480Article in journal (Refereed)
    Abstract [en]

    Rapid advances in genomics and technology have rendered genetic testing services easily accessible to consumers over the Internet in the form of direct-to-consumer genetic testing. In the EU, the IVD Directive has been animadverted for its inability to tackle the challenges direct-to-consumer genetic testing has posed. Currently, the EU legislation is in a transition state. It is thus, timely to assess, to what extent the proposed IVD Regulation is intended to address the performance requirements and utility of direct-to-consumer genetic tests, which are made available to consumers within the EU over the Internet, and discuss the developments vis-à-vis the IVD Directive. To compare with the IVD Directive, the IVD Regulation presents a major shift in how direct-to-consumer genetic testing is treated in the EU. It remains unclear, whether and how the EU requirements can be applied beyond the EU market.

  • 7.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    European Legal Perspectives on Health-Related Direct-to-Consumer Genetic Testing2016Doctoral thesis, monograph (Other academic)
    Abstract [en]

    This doctoral thesis examines how the coexistence of the Council of Europe and the EU

    influences rules on direct-to-consumer genetic testing, as well as how these influences

    reflect on individual states that are simultaneously bound to both of the legal orders of

    interest.

    Through the lens of legal pluralism and state sovereignty this research examines the

    competence and authority of the Council of Europe and the EU to handle the market aspects

    (technical performance and utility) as well as privacy (consent to a medical service

    and data protection requirements), and examines the obligations these two legal orders

    place on the Member States of the EU. This research traces the avenues for coexistence

    between the legal orders in relation to direct-to-consumer genetic testing, and examines

    how the coexistence of the Council of Europe and the EU is reflected in the legal framework

    that is relevant to the regulation of direct-to-consumer genetic testing.

    It can be observed that the EU is soaking in the Council of Europe norms in some areas,

    as with valid consent to a medical intervention, but also exporting its own norms to

    the Council of Europe in other areas, as with the area of data protection. Consequently,

    one can question whether it is increasingly becoming more difficult to draw clear limits

    between the ‘Council of Europe law’ and the ‘EU law’ in these areas. The Council of Europe

    by aligning its laws with the EU creates far-reaching implications to the states that

    are members of the Council of Europe but are not the Member States of the EU.

    This thesis claims that the resulting fragmented regulatory space and the interaction

    between the Council of Europe and the EU make the legal sources challenging to interpret

    and foresee as a result the principle of legal certainty could be undermined. In the

    absence of formalized interaction between the two legal orders, interpretation difficulties

    could create further challenges.

  • 8.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Pārskats par seksuālajām un reproduktīvajām tiesībām2015In: Medicīnas Tiesības / [ed] A-Slokenberga, Santa, Riga: Tiesu Namu Aģentūra , 2015, p. 515-586Chapter in book (Other academic)
  • 9.
    Slokenberga, Santa
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Gusarova, Agnese
    Riga Stradins University.
    Veselības aprūpe un Eiropas Savienība (EU law and health care)2015In: Medicīnas tiesīnas, Riga: Tiesu Namu Aģentūra , 2015, p. 69-148Chapter in book (Other academic)
  • 10.
    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.
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    THE RIGHT TO SCIENCE AND HUMAN GERMLINE EDITING. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act2019In: Förvaltningsrättslig Tidskrift, ISSN 0015-8585, Vol. 2, p. 199-222Article in journal (Refereed)
  • 11.
    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.
    Merino Martinez, Roxana
    Karolinska institutet.
    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. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Legal and ethical governance of intercontinental biobanking: Some experiences from a H2020 project2017In: Förvaltningsrättslig Tidskrift, ISSN 0015-8585, no 1, p. 169-192Article in journal (Refereed)
    Abstract [en]

    Biobanks exist today on every continental though they have evolved differently in different parts of the world. The African States have been involved in biobank research for a considerable time but for decades large volumes of data and samples have been transferred outside the continent to developed countries for their storage and eventual further use, thus affecting the capacity-building and development for researchers in Africa. Currently, there are ongoing projects to build biobank research capacity within the regions where they are at an early developmental stage and collaborate transnationally in that regard. One of them is B3Africa, an EU-funded project that aims to facilitate collaboration between selected EU Member States and the African States and enhance mutual data and sample exchange between the EU and African States. Within the project, an informatics platform, the eB3Kit, is being developed. The platform integrates available open-source software, services and tools for biobanking and bioinformatics. Further, an ethical and legal framework for collaboration is being drafted that may bridge biobank research activities in the EU Member States and the African States. This article focuses on the latter, the ethical and legal framework.

  • 12.
    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.

  • 13.
    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)
  • 14.
    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.

  • 15.
    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. 

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