دانلود رایگان مقاله انگلیسی داده های ژنتیکی بزرگ و چالش های حفاظت کلان داده ها - الزویر 2018

abstract

The use of various forms of big data have revolutionised scientific research. This includes research in the field of genetics in areas ranging from medical research to anthropology. Developments in this area have inter alia been characterised by the ability to sequence genome wide sequences (GWS) cheaply, the ability to share and combine with other forms of complimentary data and ever more powerful processing techniques that have become possible given tremendous increases in computing power. Given that many if not most of these techniques will make use of personal data it is necessary to take into account data protection law. This article looks at challenges for researchers that will be presented by the EU’s General Data Protection Regulation, which will be in effect from May 2018. The very nature of research with big data in general and genetic data in particular means that in many instances compliance will be onerous, whilst in others it may even be difficult to envisage how compliance may be possible. Compliance concerns include issues relating to ‘purpose limitation’, ‘data minimisation’ and ‘storage limitation’. Other requirements, including the need to facilitate data subject rights and potentially conduct a Data Protection Impact Assessment (DPIA) may provide further complications for researchers. Further critical issues to consider include the choice of legal base: whether to opt for what is often seen as the ‘default option’ (i.e. consent) or to process under the so called ‘scientific research exception’. Each presents its own challenges (including the likely need to gain ethical approval) and opportunities that will have to be considered according to the particular context in question.

Conclusion

Computational genetics is undergoing a revolution. A number of developments have fuelled this revolution. Chief amongst these is the increasing ability to produce (rapidly and for low cost) GWSs. These can be mined repeatedly because of increases in computing power. The possibility to access and share various forms of potentially compatible information throughout the online-connected world have not only allowed for more research opportunities but also changed the way we view genetic data in legal terms. In particular, it has become increasingly difficult to regard any large sequence of DNA (let alone a GWS) as being anonymous. This is because the increase in both computing power and processing algorithms taken together with the online availability of enormous amounts of complimentary data mean that it is becoming ever more likely that such samples can be linked to identifiable individuals. Therefore, it is generally accepted that meaningful sequences of DNA should be considered as personal data. The consequences of this change in the legal perception of genetic data is important because it means that one should assume that the EU’s data protection framework applies to the processing of genetic information including the mining of GWSs. From May 2018, the bedrock of this framework will be the General Data Protection Regulation. This regulation explicitly describes genetic data as ‘special’ (formerly known as ‘sensitive’) data. This means that where personal data is genetic in nature, further requirements will be incumbent upon those processing genetic data. These include requirements pertaining to data processing principles (i.e. that apply to processing of personal data in general), the need to facilitate the data protection rights of data subjects and the need to ensure that there is a correct legal base for the processing of the research data in question. Researchers may also have to perform a complex and demanding data protection impact assessment.