Similar to Directive 95/46, the GDPR acknowledges the need for a facilitating regime for research. If you are involved in any kind of scientific research, it is very likely that you are affected by the GDPR provisions. 21(6) GDPR); and. All Rights Reserved. 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Whether you conduct clinical trials, biomedical research, publicly funded, commercial, social science, marketing or customer experience research, you should bear in mind that the GDPR also regulates this activity and prescribes adherence to specific principles and provisions. The GDPR provides for aresearch exemption in Article 89 GDPR, inter alia for scientific and research purposes. The new world economy relies on data-driven technologies and systems. the GDPR provides that scientific research can be undertaken by both public and private entities, as is evidenced through the examples of scientific research: technological development and demonstration, fundamental research, applied research and privately funded research, as well as public health research. BBMRI-ERIC Webinar - ELSI The GDPR and Scientific Research. For example: the GDPR allows lawfully collected data (, if the data are not obtained directly from the individual, the GDPR also relaxes the normal transparency requirements. The GDPR and national data protection laws can, and often do, complicate the matter of sharing personal data, and health data in particular. For more information please contact our team: Human genomics, human enhancement, artificial intelligence and robotics offer benefits for both individuals and society. Last Tuesday, the EDPB published its Guidelines 03/2020 on the processing of data concerning health for the purpose of scientific research in the context of the COVID-19 outbreak. Therefore, it is important for universities that undertake research and process personal data for research purposes to be cognisant of these rights. Public health research is treated as a subset of scientific research under the GDPR (see Recital 159), and, therefore, the same exemptions and requirements apply. 14:45-15:45 (CET) – Complex Interactions: the GDPR, Data Protection and Research The GDPR provides safeguards and derogations relating to the processing of personal data for scientific research purposes. Repeatedly ranked as having one of the best privacy practices in the world, Covington combines exceptional substantive expertise with an unrivaled understanding of the IT industry, and of e-commerce and digital media business models in particular. Copyright © 2020, Covington & Burling LLP. Vulnerable groups have been impacted disproportionately: even. Complex legal issues in relation to further processing for research purposes. As noted above, the scope of the notion of research under the GDPR is wide. Purpose of Paper The EU General Data Protection Regulation (GDPR) comes into effect in all EU Member States on 25 May 2018.1 This Paper provides EFAMRO and ESOMAR members with a framework to … It is important to consider which processing ground and … Appendix 42 Key GDPR provisions 42 . The safeguards include technical and organisational measures, data minimisation and pseudonymisation. The GDPR aims to establish a uniform legal framework applicable to the processing of personal data across Europe, while allowing Member States to legislate differently with regard to specific matters. The EU General Data Protection Regulation (GDPR), along with the new UK Data Protection Act, will govern the processing (holding or using) of personal data in the UK. The GDPR offers sufficient tools to use health data for scientific research in the context of COVID-19. The Article 89 exemption can only be relied upon if the research cannot be done in a way that would not enable individuals to be identified and there are appropriate safeguards in place for the rights and freedoms of data. GDPR recital 33 notes that research must act in a manner that is ‘in keeping with recognized ethical standards for scientific research’, and the UCL REC and other ethical review boards will usually expect informed consent. By Trix Mulder, LL.M. One of those matters is the processing of personal data for scientific research purposes. In research we hold personal data surrounding our participants and therefore need to be aware of data protection regulations when carrying out our day-to-day work. There is a strong debate on whether the new General Data Protection Regulation (GDPR) constitutes an enabler or hindrance for scientific research. As medical data often involves special categories of personal data, there are some additional rules in place with regard to for instance security measures and consent. You can find more information about the specifics of the legislation on the GDPR details for researchers page. Although the new regulations haven’t been designed specifically for research, we’ll need to make some changes to research practice. Article 42 GDPR Execution Act: where processing takes place solely for scientific or historical research purposes, or statistical purposes, the controller may declare articles 15, 16 and 18 of the GDPR inapplicable. Oftentimes, it will not be the GDPR that restricts the sharing of health data, but rather the stricter and/or ill-adapted national rules that deviate from the GDPR. This means that the derogations mentioned above may not always apply or may not apply in the same way across the EU. Data is knowledge and innovation, ensuring scientific progress. 20 11 Art. The scope of the GDPR is broad. The resources below will help you understand the new requirements as they relate to research. The EU General Data Protection Regulation (GDPR), along with the new UK Data Protection Act 2018, will govern the processing (holding or using) of personal data in the UK. They explored possible implications of the GDPR on the operation of R&D and science, and on collaborative EU research. Research and GDPR [PDF 192.89KB] More details about ... scientific or historical research purposes or statistical purposes” (Article 89). However, the GDPR also contains several provisions applicable exclusively to public health research.First, the GDPR encourages the member states to enact greater protections for the processing of sensitive data for health-related purposes. Missing, however, from the GDPR list of research-friendly provisions is an appreciation of the international dimensions of research and, consequently, a corresponding appropriate provision to enable scientific research data transfers across the globe. Tips for GDPR Compliant Scientific and Statistical Research 37 7. COVID-19, Scientific Research and the GDPR – Some Basic Principles, Brexit Deal Keeps EU-UK Data Flows Open as Parties Pursue Mutual Adequacy, The EU’s Cybersecurity Strategy for the Next Decade, The European Union Agency for Cybersecurity Publishes a Draft Certification Scheme for Cloud Services, Twitter Fine: a View into the Consistency Mechanism, and “Constructive Awareness” of Breaches, It may be self-evident, but it is still worth noting, that the GDPR does, The GDPR does, however, apply to the personal data of any living individual, and those who are unfortunate enough to host the virus. They often rely on processing personal data, and, in particular, sensitive or special personal data, whether for research, clinical trials, pharmacovigilance, or to programme machine learning in the operation of medical devices. Home > COVID-19 > COVID-19, Scientific Research and the GDPR – Some Basic Principles. Although the new regulations haven’t been designed specifically for research, we’ll need to make some minor changes to research … In January 2019, the European Data Protection Board (EDPB) adopted in its Opinion 3/2019 on the interplay between the Clinical Trials Regulation and the GDPR. After the GDPR entered into force in 2016, ISC organised an influential seminar that mainly gathered experts, EU policy- and decision-makers, and representatives from research organisations, industry and advocacy groups. As scientists work around the clock to gain insights into the Corona virus and how to fight it, public and private-sector stakeholders are in discussions to promote the rapid exchange of scientific data. There is, however, a distinction between personal data and special categories of personal data . During these discussions, the GDPR acronym inevitably rears its head and casts doubt over what is lawful. In this article, we look at the impact of the GDPR on scientific research based on a report prepared for the European Parliamentary Research Service. For example, data sets consisting of “virus genetic sequence and other data related to the virus + age group of the patient (. However, if the above information were to originate from an named hospital with on only one infected patient in this age group, the data could then be personal data, as re-attribution to the person would probably not require much effort. In general, the GDPR is considered a further safeguard and enabler for scientific research mainly due to: Nonetheless, the GDPR provisions have been received with scepticism by research-associated stakeholders, mainly for the following reasons: Similar to scientific research, the GDPR is not a piece of legislation to be assessed independently of its intent, consequences and benefits concerning individuals and society at large. 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. Join our mailing lists to receive updates about our latest research and to hear about our free public events and exhibitions. 5 (1) (b) & 89 (1) GDPR); if the data are not obtained directly from the individual, the GDPR also relaxes the normal transparency requirements. The GDPR potentially affects the clinical and other scientific research activities of academic medical centers and other research organizations in the United States if the research involves Personal Data about individuals located in those countries regardless of the individuals’ citizenship status in the countries, but generally will not affect Personal Data collected from individuals then residing in the … Despite EU data protection laws having been in place for over two decades now, the boundary between personal data and anonymous data is often frustratingly unclear. Scientific research and the new General Data Protection Regulation (GDPR) Datum: 24 mei 2018: GDPR. While the legal landscape is undoubtedly complex, data privacy regulators are aware of the critical need to exchange data to advance important research aims. 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