ABSTRACT
Linked survey and Twitter data present an unprecedented opportunity for social scientific analysis, but the ethical implications for such work are complex-requiring a deeper understanding of the nature and composition of Twitter data to fully appreciate the risks of disclosure and harm to participants. In this article, we draw on our experience of three recent linked data studies, briefly discussing the background research on data linkage and the complications around ensuring informed consent. Particular attention is paid to the vast array of data available from Twitter and in what manner it might be disclosive. In light of this, the issues of maintaining security, minimizing risk, archiving, and reuse are applied to linked Twitter and survey data. In conclusion, we reflect on how our ability to collect and work with Twitter data has outpaced our technical understandings of how the data are constituted and observe that understanding one's data is an essential prerequisite for ensuring best ethical practice.
Subject(s)
Computer Security/ethics , Data Curation/ethics , Disclosure/ethics , Informed Consent/ethics , Privacy , Research Design , Social Media , Data Collection/ethics , Ethics, Research , Humans , Surveys and QuestionnairesABSTRACT
O surgimento de novos softwares baseados em tecnologia blockchain lançam novas perguntas ao novo RGPD, criticado por ter sido criado tendo apenas em vista realidades virtuais centralizadas de controlo de dados. Apesar de quer o RGPD, quer o blockchaindesejarem objetivos comuns, como o aumento da transparência e da confiança na troca de dados online, a verdade é que em vários aspetos os desentendimentos entre ambos são reais: certas noções, como a de responsável pelo tratamento ou subcontratante, dificilmente se adequam; certos direitos, como o direito ao esquecimento ou à transferência de dados, correm o risco de perder conteúdo útil; ou mesmo certos princípios, como o da limitação de tratamento, dificilmente se compatibilizam com esta nova tecnología
La creación y el surgimiento de nuevos programas informáticos basados en la tecnología blockchain desafían el reciente GDPR con nuevas cuestiones, ya que se le critica tener en cuenta sólo las realidades virtuales basadas en el control centralizado de datos. A pesar de que tanto el RGDP como la blockchain comparten intereses comunes para aumentar la transparencia y la confianza en el intercambio de datos en línea, lo cierto es que, en varios aspectos, los malentendidos entre ambos son reales: algunas nociones como la de controlador o procesador de datos, son poco adecuadas; ciertos derechos, como el derecho al olvido o el derecho a la portabilidad de los datos corren el riesgo de perder su aplicación; o incluso ciertos principios, como la minimización de datos, son difícilmente compatibles con esta nueva tecnología
The creation and emergence of new software based on blockchain technology challenge the recent GDPR to new questions, as it is severely criticized for bearing in mind only virtual realities based on centralized data control. Despite both RGDP and blockchain share common interests in increasing transparency and confidence in online data exchange, the truth is that in several ways misunderstandings between the two are real: certain notions, such as data controller or processor, hardly adequate; certain rights, such as right to be forgotten or the right to data portability risk losing their enforcement; or even certain principles, such as data minimization, are hardly compatible with this new technology
La creació i el sorgiment de nous programes informàtics basats en la tecnologia blockchain desafien el recent GDPR amb noves qüestions, ja que se li critica tenir en compte només les realitats virtuals basades en el control centralitzat de dades. A pesar que tant el RGDP com la blockchain comparteixen interessos comuns per a augmentar la transparència i la confiança en l'intercanvi de dades en línia, la veritat és que, en diversos aspectes, els malentesos entre tots dos són reals: algunes nocions com la de controlador o processador de dades, són poc adequades; certs drets, com el dret a l'oblit o el dret a la portabilitat de les dades corren el risc de perdre la seva aplicació; o fins i tot certs principis, com la minimització de dades, són difícilment compatibles amb aquesta nova tecnología
Subject(s)
Software/ethics , Software/legislation & jurisprudence , Confidentiality , Computer Security/legislation & jurisprudence , Computer Communication Networks , Computer Communication Networks/legislation & jurisprudence , Data Curation/ethics , Electronic Data Processing/ethics , Electronic Data Processing/legislation & jurisprudenceABSTRACT
Indigenous data governance principles assert that Indigenous communities have a right to data that identifies their people or communities, and a right to determine the use of that data in ways that support Indigenous health and self-determination. Indigenous-driven use of the databases held at the Institute for Clinical Evaluative Sciences (ICES) has resulted in ongoing partnerships between ICES and diverse Indigenous organizations and communities. To respond to this emerging and complex landscape, ICES has established a team whose goal is to support the infrastructure for responding to community-initiated research priorities. ICES works closely with Indigenous partners to develop unique data governance agreements and supports processes, which ensure that ICES scientists must work with Indigenous organizations when conducting research that involves Indigenous peoples.
