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In: Das sogenannte Recht auf Nichtwissen

UNESCO has fulfilled its ethical mandate in 2015 and in 2016 foremost by standard-setting activities within its various ethics committees. The IBC’ and IGBC’S work focused on the principle of benefit sharing, on the update of IBC’S reflection on the issues of the human genome and human rights as well as on big data in health care and health research and on bioethical questions arising from conditions of refugees and migrants. In the meantime, COMEST has concentrated its efforts on climate change and on elaborating on a post-2015 agenda for the context of science, technology and society as well as on the ethics of water and oceans and the ethics of robotics. Common feature of the standard-setting work of these bodies in 2015 and 2016 remains that UNESCO establishes a strong link between bioethical principles and the human rights framework. However, the developed global principles in different areas have again not resulted in a declaratory standard-setting and thus remain beyond any factual binding force of the already established three international and universal declarations of UNESCO in the field of bioethics. Although an intensified cooperation between the different bodies can be observed, it remains to be seen, which results the external auditing of the work of UNESCO brings about on the issue of governance within the organization.

In: Max Planck Yearbook of United Nations Law Online

Complying with the statutory mission of promoting collaboration in science the United Nations Educational, Scientific and Cultural Organization (unesco) perceives an ethical mandate which commenced in the 1970s and has been object of ongoing establishment regarding its integration into the human rights framework and its institutionalization ever since. The main achievements within this mandate are so far unesco’s standard-setting activities, among which the most important are three universal declarations, and its field work based on different ethical projects which aim at expanding capacities, coordination and the international cooperation within bioethics. As for the ethical achievements in 2014, these are basically rooted in the Medium-term Strategy 2014–2021 and manifested in the working program of International Bioethics Committee (ibc) for 2014–2015. They were discussed in and already partly realized through the Joint Session of the ibc and the Intergovernmental Bioethics Committee and the meetings of the 21st Session of the ibc. Together with unesco’s field work in 2014, the progress is important regarding the role of ethics within the human rights framework; the cooperation between unesco’s bioethical committees; the involvement of organizations in the work of unesco; and its future standard-setting activities.

In: Max Planck Yearbook of United Nations Law Online
In: Genetic Transparency? Ethical and Social Implications of Next Generation Human Genomics and Genetic Medicine
Normatives Fundament und anwendungspraktische Geltungskraft
Spätestens mit Inkrafttreten des Gendiagnostikgesetzes wird in Recht, Ethik und Genetik verstärkt diskutiert, wie das dort dem Grunde nach anerkannte „Recht auf Nichtwissen“ in den jeweiligen konkreten Anwendungskontexten rechtspraktisch operationalisiert werden kann. Vor diesem Hintergrund etablierte sich eine vom BMBF geförderte Göttinger Projektgruppe (2013–2015), die sich aus renommierten Vertretern der Fachdisziplinen Ethik, Humangenetik, Genetischer Psychiatrie und Recht zusammensetzte. Ihr Ziel war es, unter besonderem Fokus auf die aktuellen bzw. absehbaren technologischen Entwicklungen der modernen Gensequenzierung den zentralen Wertekonflikt im Spannungsfeld von „Autonomie“ und „ärztlicher Fürsorge“ interdisziplinär und systematisch unter anderem auf Grundlage einer begleitenden Fragebogenstudie zu analysieren. Dieser Band bündelt die wesentlichen Erkenntnisse der einzelnen Forschungsdisziplinen; zudem beziehen weitere namhafte Experten zu den Ergebnissen und aktuellen Entwicklungen vertiefend Stellung.

Abstract

Contemporary biomedical research heavily relies on secondary use of personal health data that were obtained in a different clinical or research setting. Under the European Union’s General Data Protection Regulation (GDPR), data controllers processing personal data must comply with the principle of purpose limitation, which restricts further processing of personal data beyond the purpose for which the data were initially collected. However, “further processing” is not explicitly defined, resulting in considerable interpretive ambiguities as to whether “secondary use” of data by researchers constitutes “further processing” under the GDPR. This ambiguity is problematic as it exposes researchers to potential non-compliance risks. In this article, we analyse the term “further processing” within the meaning of the GDPR, elucidate important aspects in which it differs from “secondary use”, and discuss the implications for data controllers’ GDPR compliance obligations. Subsequently, we contextualise this analysis within a broader discussion of regulating scientific research under the GDPR.

Open Access
In: European Journal of Health Law