How to address data privacy concerns when using social media data in conservation science

Social media data are being increasingly used in conservation science to study human–nature interactions. User-generated content, such as images, video, text, and audio, and the associated metadata can be used to assess such interactions. A number of social media platforms provide free access to user-generated social media content. However, similar to any research involving people, scientific investigations based on social media data require compliance with highest standards of data privacy and data protection, even when data are publicly available. Should social media data be misused, the risks to individual users’ privacy and well-being can be substantial. We investigated the legal basis for using social media data while ensuring data subjects’ rights through a case study based on the European Union’s General Data Protection Regulation. The risks associated with using social media data in research include accidental and purposeful misidentification that has the potential to cause psychological or physical harm to an identified person. To collect, store, protect, share, and manage social media data in a way that prevents potential risks to users involved, one should minimize data, anonymize data, and follow strict data management procedure. Risk-based approaches, such as a data privacy impact assessment, can be used to identify and minimize privacy risks to social media users, to demonstrate accountability and to comply with data protection legislation. We recommend that conservation scientists carefully consider our recommendations in devising their research objectives so as to facilitate responsible use of social media data in conservation science research, for example, in conservation culturomics and investigations of illegal wildlife trade online.Peer reviewe

Ethical aspects in research data management

The CARE (Collective benefit, Authority to control, Responsibility, and Ethics) and the FAIR (Findable, Accessible, Interoperable and Reusable) are among the main principles for good scientific practice and ethically sound research data management. Ethics issues arise whenever research involves human participants and their cells or tissues; personal data; rare plants or seeds; animals; artificial intelligence as well as methods, materials; or experiments that could harm the environment, research staff, or participants. The first step towards ethical research data management lies in the identification of ethical issues and performing risk-benefit analysis for the subjects involved and research outcomes related to science and society. Information security and data protection analyses might be needed if personal data will be collected. Depending on the study design and data collection involved, the study can be subject to special permission from one of the ethics commissions at the faculties of the University of Bern or from the Cantonal Ethics Commission. Data security aspects should be accurately considered by design using new tools, technologies, and infrastructure. The Open Science Team at the University Library of Bern recommends licensing research data under the CC 0 or the newest version of the CC BY licenses to allow maximal reusability. If data cannot be openly published due to ethical or legal reasons, metadata, and supplementary material can be published under CC0 to fulfill funders' agencies' requirements

Ethical Issues in Empirical Studies of Software Engineering

The popularity of empirical methods in software engineering research is on the rise. Surveys, experiments, metrics, case studies, and field studies are examples of empirical methods used to investigate both software engineering processes and products. The increased application of empirical methods has also brought about an increase in discussions about adapting these methods to the peculiarities of software engineering. In contrast, the ethical issues raised by empirical methods have received little, if any, attention in the software engineering literature. This article is intended to introduce the ethical issues raised by empirical research to the software engineering research community, and to stimulate discussion of how best to deal with these ethical issues. Through a review of the ethical codes of several fields that commonly employ humans and artifacts as research subjects, we have identified major ethical issues relevant to empirical studies of software engineering. These issues are illustrated with real empirical studies of software engineering

Open Data, Grey Data, and Stewardship: Universities at the Privacy Frontier

As universities recognize the inherent value in the data they collect and hold, they encounter unforeseen challenges in stewarding those data in ways that balance accountability, transparency, and protection of privacy, academic freedom, and intellectual property. Two parallel developments in academic data collection are converging: (1) open access requirements, whereby researchers must provide access to their data as a condition of obtaining grant funding or publishing results in journals; and (2) the vast accumulation of 'grey data' about individuals in their daily activities of research, teaching, learning, services, and administration. The boundaries between research and grey data are blurring, making it more difficult to assess the risks and responsibilities associated with any data collection. Many sets of data, both research and grey, fall outside privacy regulations such as HIPAA, FERPA, and PII. Universities are exploiting these data for research, learning analytics, faculty evaluation, strategic decisions, and other sensitive matters. Commercial entities are besieging universities with requests for access to data or for partnerships to mine them. The privacy frontier facing research universities spans open access practices, uses and misuses of data, public records requests, cyber risk, and curating data for privacy protection. This paper explores the competing values inherent in data stewardship and makes recommendations for practice, drawing on the pioneering work of the University of California in privacy and information security, data governance, and cyber risk.Comment: Final published version, Sept 30, 201

Spatially Explicit Data: Stewardship and Ethical Challenges in Science

Scholarly communication is at an unprecedented turning point created in part by the increasing saliency of data stewardship and data sharing. Formal data management plans represent a new emphasis in research, enabling access to data at higher volumes and more quickly, and the potential for replication and augmentation of existing research. Data sharing has recently transformed the practice, scope, content, and applicability of research in several disciplines, in particular in relation to spatially specific data. This lends exciting potentiality, but the most effective ways in which to implement such changes, particularly for disciplines involving human subjects and other sensitive information, demand consideration. Data management plans, stewardship, and sharing, impart distinctive technical, sociological, and ethical challenges that remain to be adequately identified and remedied. Here, we consider these and propose potential solutions for their amelioration

Samples and data accessibility in research biobanks. An explorative survey

Biobanks, which contain human biological samples and/or data, provide a crucial contribution to the progress of biomedical research. However, the effective and efficient use of biobank resources depends on their accessibility. In fact, making bio-resources promptly accessible to everybody may increase the benefits for society. Furthermore, optimizing their use and ensuring their quality will promote scientific creativity and, in general, contribute to the progress of bio-medical research. Although this has become a rather common belief, several laboratories are still secretive and continue to withhold samples and data. In this study, we conducted a questionnairebased survey in order to investigate sample and data accessibility in research biobanks operating all over the world. The survey involved a total of 46 biobanks. Most of them gave permission to access their samples (95.7%) and data (85.4%), but free and unconditioned accessibility seemed not to be common practice. The analysis of the guidelines regarding the accessibility to resources of the biobanks that responded to the survey highlights three issues: (i) the request for applicants to explain what they would like to do with the resources requested; (ii) the role of funding, public or private, in the establishment of fruitful collaborations between biobanks and research labs; (iii) the request of co-authorship in order to give access to their data. These results suggest that economic and academic aspects are involved in determining the extent of sample and data sharing stored in biobanks. As a second step of this study, we investigated the reasons behind the high diversity of requirements to access biobank resources. The analysis of informative answers suggested that the different modalities of resource accessibility seem to be largely influenced by both social context and legislation of the countries where the biobanks operate

Building up the “Accountable Ulysses” model. The impact of GDPR and national implementations, ethics, and health-data research: Comparative remarks.

The paper illustrates obligations emerging under articles 9 and 89 of the EU Reg. 2016/679 (General Data Protection Regulation, hereinafter “GDPR”) within the health-related data pro- cessing for research purposes. Furthermore, through a comparative analysis of the national implementations of the GDPR on the topic, the paper highlights few practical issues that the researcher might deal with while accomplishing the GDPR obligations and the other ethical requirements. The result of the analyses allows to build up a model to achieve an acceptable standard of accountability in health-related data research. The legal remarks are framed within the myth of Ulysse

The course of lectures on discipline “Intellectual property” (for the 5 year students of the specialty 8.03060101 “Management”)

Затверджено на засіданні кафедри менеджменту інноваційної діяльності та підприємнцтва. Протокол No 1 від 27 серпня 2015 р. Рекомендовано методичною комісією факультету управління і бізнесу у виробництві ТНТУ імені Івана Пулюя. Протокол No 6 від 26 лютого 2016 р.У методичних вказівках, у відповідності до робочої програми, сформовано лекційний матеріал з дисципліни “Інтелектуальна власність” для іноземних студентів спеціальності 8.03060101 “Менеджмент організацій та адміністрування”.Методичні вказівки призначені для допомоги іноземним студентам при вивченні курсу “Інтелектуальна власність”. У методичних вказівках містяться загальні теоретичні відомості, необхідні до вивчення даного курсу. Рекомендовано для іноземних студентів спеціальності 8.03060101 “Менеджмент організацій та адміністрування” з метою закріплення, поглиблення і узагальнення знань, одержаних студентами за час навчання та їх застосування до комплексного вирішення конкретного фахового завдання із дисципліни “Інтелектуальна власність”. Складено з урахуванням робочої програми вивчення курсу, методичних розробок інших вузів, а також матеріалів літературних джерел, наведених у рекомендованій літературі

Neuroimaging Research into Disorders of Consciousness: Moral Imperative or Ethical and Legal Failure?

This article explores the ethical and legal implications of enrolling individuals with disorders of consciousness (DOC) in neuroimaging research studies. Many scientists have strongly emphasized the need for additional neuroimaging research into DOC, characterizing the conduct of such studies as morally imperative. On the other hand, institutional review boards charged with approving research protocols, scientific journals deciding whether to publish study results, and federal agencies that disburse grant money have limited the conduct, publication, and funding of consciousness investigations based on ethical and legal concerns. Following a detailed examination of the risks and benefits of neuroimaging research involving individuals with DOC, the author urges IRBs, scientific journals, and funding agencies to no longer stall the conduct, publication, and funding of neuroimaging research into DOC if certain criteria designed to protect the health and safety of individuals with DOC are satisfied

Ethical issues of electronic patient data and informatics in clinical trial settings

The field of cancer bio-informatics unites the disciplines of scientific and clinical research withclinical practice and the treatment of individual patients. There is a need to study patients andsometimes their families, over many decades, to follow disease progress and long-term outcomes.This may require research teams to access the routinely-collected health data from generalpractice and hospital health records, prior to and after the cancer diagnosis is made. This clinicalinformation will increasingly include data provided by patients or acquired from them throughwearable devices that can monitor or deliver treatment, and data acquired from genetic relativesof the patient.All of these data, whether explicitly collected for the purpose of a clinical study, or routinelycollected as part of a patient?s life-time healthcare journey, are personal health data. There areethical and legal requirements to manage these data with care. This chapter explores the ethicalrequirements for collecting, holding, analysing and sharing personal health data, and thelegislation covering such activities