This review is based on an expanded version of the session outcome document we prepared for WSIS. The outcome was providing a summary of the session: Data Ethics and the Ethics of Digital and Emerging Technologies – Building Trust, Serving Humanity – Globethics, which was held a few days earlier from 16:00 to 16:45, Monday, 13 March 2023 at the Geneva International Conference Center, under the auspices of the ITU.

In informationally mature societies, almost all organisations record, generate, process, use, share and disseminate data. In particular, the rise of AI and autonomous systems has corresponded to an improvement in computational power and in solving complex problems. However, the resulting possibilities have been coupled with an upsurge of ethical risks. To avoid the misuse, underuse, and harmful use of data and data-based systems like AI, we should use an ethical framework appropriate to the object of its reasoning. (...) Unfortunately, in recent years, the space for data-related ethics has not been precisely defined in organisations. As a consequence, there has been an overlapping of responsibilities and a void of clear accountabilities. Ethical issues have, therefore, been dealt with using inadequate levels of abstraction (e.g. legal, technical). Yet, if building an ethical infrastructure requires the collaboration of each body, addressing ethical issues related to data requires leaving room for the appropriate level of abstraction. This paper first aims to show how the space of data ethics is already latent in organisations. It then highlights how to redefine roles (chief data ethics officer, data ethics committee, etc.) and codes (code of data ethics) to create and maintain an environment where ethical reasoning about data, information, and AI systems may flourish. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind the (...) Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

We live in the Information Age. Advances over the past 50 years in computing technology have enabled ever-expanding capacity to generate, store, transfer, process and analyse information about people, societies, products, services, the environment—nearly every aspect of the world. In parallel, concerns over how such data is being used have emerged, focusing especially on issues of privacy and confidentiality. Yet as technological capabilities continue to expand, the debate over ethical uses of data inevitably has evolved as well. Whereas (...) we used to just talk about data, now there is great concern over Big Data. This chapter explores what, exactly, Big Data is; the ethical ramifications of its emergence, particularly for consent and anonymization; and what sorts of policy solutions are being proposed to address these emerging challenges. We will not defend one particular approach, but hope this chapter can be a useful reference for those who are contemplating difficult questions surrounding responsible management of Big Data. (shrink)

For those who believe in the promise of higher education to shape a better future, this may be a time of unprecedented despair. Stories of students regularly cheating in their classes, admissions officers bending the rules for VIPs, faculty fudging research data, and presidents plagiarizing seem more rampant than ever before. If those associated with our institutions of higher learning cannot resist ethical corruption, what hope do we have for an ethical society? In this edited volume, higher education experts (...) and scholars tackle the challenge of understanding why ethical misconduct occurs in the academy and how we can address it. The volume editor and contributing authors use a systems framework to analyze ethical challenges in common functional areas (e.g., testing and admissions, teaching and learning, research, fundraising, spectator sports, and governance), highlighting that misconduct is shaped by both individuals and the contexts in which they work, study, and live. The volume argues compellingly for colleges and universities to make ethics a strategic, institutional priority. Higher education researchers, students, and practitioners will find this volume and its application of empirical research, real-life examples, and illustrative case studies to be an inspiring and applicable read. (shrink)

For those who believe in the promise of higher education to shape a better future, this may be a time of unprecedented despair. Stories of students regularly cheating in their classes, admissions officers bending the rules for VIPs, faculty fudging research data, and presidents plagiarizing seem more rampant than ever before. If those associated with our institutions of higher learning cannot resist ethical corruption, what hope do we have for an ethical society? In this edited volume, higher education experts (...) and scholars tackle the challenge of understanding why ethical misconduct occurs in the academy and how we can address it. The volume editor and contributing authors use a systems framework to analyze ethical challenges in common functional areas (e.g., testing and admissions, teaching and learning, research, fundraising, spectator sports, and governance), highlighting that misconduct is shaped by both individuals and the contexts in which they work, study, and live. The volume argues compellingly for colleges and universities to make ethics a strategic, institutional priority. Higher education researchers, students, and practitioners will find this volume and its application of empirical research, real-life examples, and illustrative case studies to be an inspiring and applicable read. (shrink)

Aims To examine the understanding of the ethical dilemmas associated with Big Data and artificial intelligence (AI) among Jordanian medical students, physicians in training, and senior practitioners. Methods We implemented a literature-validated questionnaire to examine the knowledge, attitudes, and practices of the target population during the period between April and August 2023. Themes of ethical debate included privacy breaches, consent, ownership, augmented biases, epistemology, and accountability. Participants’ responses were showcased using descriptive statistics and compared between groups using t-test or (...) ANOVA. Results We included 466 participants. The greater majority of respondents were interns and residents (50.2%), followed by medical students (38.0%). Most participants were affiliated with university institutions (62.4%). In terms of privacy, participants acknowledged that Big Data and AI were susceptible to privacy breaches (39.3%); however, 59.0% found such breaches justifiable under certain conditions. For ethical debacles involving informed consent, 41.6% and 44.6% were aware that obtaining informed consent posed an ethical limitation in Big Data and AI applications and denounced the concept of “broad consent”, respectively. In terms of ownership, 49.6% acknowledged that data cannot be owned yet accepted that institutions could hold a quasi-control of such data (59.0%). Less than 50% of participants were aware of Big Data and AI’s abilities to augment or create new biases in healthcare. Furthermore, participants agreed that researchers, institutions, and legislative bodies were responsible for ensuring the ethical implementation of Big Data and AI. Finally, while demonstrating limited experience with using such technology, participants generally had positive views of the role of Big Data and AI in complementing healthcare. Conclusion Jordanian medical students, physicians in training and senior practitioners have limited awareness of the ethical risks associated with Big Data and AI. Institutions are responsible for raising awareness, especially with the upsurge of such technology. (shrink)

Due to the variety of research ethics and integrity training formats it may be challenging to use a common instrument to monitor and evaluate the development of competencies and learning progress as well as determine the effectiveness of the training. The present study scrutinises the use of learning diaries as one possible measure to evaluate the development of ethics competencies. The aim of the study was to increase understanding about how learning diaries capture development of research ethics (...) and integrity competencies of participants and explore the use of diaries as a measure of training effectiveness. In the evaluative case study, a micro-credential programme was used as the context of the study and data was analysed using deductive content analysis. As a result, we outline criteria for analysis to be used in ethics training programmes for learning diaries. Results indicated that learning diaries submitted in the forum format (compared to individual submissions) provide peer support, so learners display more content knowledge on high levels of reflection and understanding. Submitting learning diaries over a longer period and making submissions repeatedly can improve writing and reflection competencies. The quality of learning diary entries may also depend on learner characteristics, such as commitment and motivation. Keeping a learning diary can help retain obtained competencies over a longer period. The article ends with a set of recommendations for implementing learning diaries as one measure of evaluation. (shrink)

Purpose Along with their immense benefit, online channels of communication and information-sharing also present a myriad set of challenges. The unauthorized downloading and sharing of copyrighted content such as music and movies is one such issue. This study aims to examine the factors related to the unauthorized downloading of content amongst young internet users in an emerging market. Design/methodology/approach An online structured questionnaire was used to collect primary data from 219 internet users between 17 and 24 years (...) of age. The partial least squares structural equation modelling was used to analyse the primary data. Findings The study findings report that monetary savings and social influence are the main drivers underlying the propensity to engage in unauthorized downloading amongst young adults. Perceptions of harm caused to artists and producers appear to be a deterrent. Though the respondents perceive the quality of content downloaded from unauthorized sites to be less than desirable, and there is also a higher perceived threat from viruses, this does not appear to deter unauthorized downloading behaviour amongst this segment of consumers. Research limitations/implications Combating unauthorized downloading and other forms of questionable online behaviours is a challenge for multiple stakeholders. Consumption of unauthorized digital content is examined in the context of online consumers whose demographic profile is often associated with this category of questionable behaviour. The study adds to the extant understanding of the aetiology of what are often considered online unethical and illegal behaviours and makes both practical and theoretical contributions to the subject field. Originality/value The study examines an important aspect of rapidly evolving internet technologies. The internet provides a veil to individuals engaging in unethical online activities. Despite the existence of laws declaring these activities to be illegal, instances of copyright violations of music and movies abound. The insights regarding the drivers and deterrents of a form of online unauthorized activity are used to present a set of strategies aimed at addressing such behaviours. (shrink)

This paper explores some key discrepancies between two sets of normative requirements applicable to the research use of personal data and human biological materials: the data protection regime which follows the application of the European Union General Data Protection Regulation, and the Declaration of Helsinki, CIOMS guidelines and other research ethics regulations. One source of this controversy is that the GDPR requires consent to process personal data to be clear, concise, specific and granular, freely given (...) and revocable and therefore has challenged the concept of ‘broad consent’, which has been widely applied in the context of biobanking. Another source of controversy is the interplay between regulations of research ethics and protection of personal data related to the secondary use of personal data and biological materials. In this case, the GDPR ‘research condition’ provides an alternative to re-consent for the use of previously collected personal data and biological materials. Although the mentioned controversies have been raised in the legal literature, they have not been explicitly addressed from the research ethics perspective. Should consent be regarded as a priority legal basis for personal data processing in health data research? Can broad consent still be a suitable legal ground for biobanking? What should be the role of research ethics provisions that differ from the GDPR standards, and what should be the role and function of research ethics committees in the changing environment of health data research? These are the ongoing controversies to be explored in the paper. (shrink)

Many computer users are happy to be oblivious of the workings within the machine and yet on some level it is important to know what is occurring therein. This paper discusses an unusual type of surveillance software which may be installed in many computers. The strange aspect of this software is that it has often been downloaded and installed by the user, but without her knowledge. The software is mainly designed to collect information about the user of the computer and (...) relay this information back to the software manufacturer. The download, installation, data collection and data transfer all take place within the users own computer but very seldom with the users knowledge. It is the intention of this paper to describe the technology involved and thereafter discuss how this new technology is affecting the online privacy debate. The paper continues to discuss the basis for legitimacy of technology and also the current level of technological deterrents available. The paper concludes with a comparison of two approaches at resolving the current problem, via legislation or the market approach. (shrink)

This contribution discusses the development of the Data Ethics Decision Aid (DEDA), a framework for reviewing government data projects that considers their social impact, the embedded values and the government’s responsibilities in times of data-driven public management. Drawing from distinct qualitative research approaches, the DEDA framework was developed in an iterative process (2016–2018) and has since then been applied by various Dutch municipalities, the Association of Dutch Municipalities, and the Ministry of General Affairs (NL). We present (...) the DEDA framework as an effective process to moderate case-deliberation and advance the development of responsible data practices. In addition, by thoroughly documenting the deliberation process, the DEDA framework establishes accountability. First, this paper sheds light on the necessity for data ethical case deliberation. Second, it describes the prototypes, the final design of the framework, and its evaluation. After a comparison with other frameworks, and a discussion of the findings, the paper concludes by arguing that the DEDA framework is a useful process for ethical evaluation of data projects for public management and an effective tool for creating awareness of ethical issues in data practices. (shrink)

Purpose As data-driven tools increasingly shape our life and tech ethics crises become strikingly frequent, data ethics coursework is urgently needed. The purpose of this study is to map the field of data ethics curricula, tracking relations between courses, instructors, texts and writers, and present a proof-of-concept interactive website for exploring these relations. This method is designed to be used in curricular research and development and provides multiple vantage points on this multidisciplinary field. Design/methodology/approach (...) The authors use data science methods to foster insights about the field of data ethics education and literature. The authors present a semantic, linked open data graph in the Resource Description Framework, along with proof-of-concept analyses and an exploratory website. Its framework is open-source and language-agnostic, providing the seed for future contributions of code, syllabi and resources from the global data ethics community. Findings This method provides a convenient means of exploring an overview of the field of data ethics’ social and textual relations. For educators designing or refining a course, the authors provide a method for curricular introspection and discovery of transdisciplinary curricula. Research limitations/implications The syllabi the authors have collected are self-selected and represent only a subset of the field. Furthermore, this method exclusively represents a course’s assigned literature rather than a holistic view of what courses teach. The authors present a prototype rather than a finished product. Originality/value This curricular survey provides a new way of modeling a field of study, using existing ontologies to organize graph data into a comprehensible overview. This framework may be repurposed to map the institutional knowledge structures of other disciplines, as well. (shrink)

Herbert Spencer (1820–1903), Victorian philosopher, biologist, sociologist and political theorist, one of the founders of Social Darwinism and author of the phrase 'survival of the fittest', was nominated for the Nobel Prize for Literature in 1902, losing out to Theodor Mommsen. Spencer left his post at The Economist in 1857 to focus on writing his ten-volume System of Synthetic Philosophy, a work that offers an ethics-based guide to human conduct to replace that provided by conventional religious belief. Published in (...) 1879, this volume seeks to demonstrate that social evolution tends towards greater individualism, altruism and co-operation. Spencer argues that it is possible to establish rules of right conduct on a scientific basis, and declares that this work is the culmination of his life's study. He was anxious to publish it outside the planned order of the System, because he feared (wrongly) that his death would prevent its completion. (shrink)

There is increasing concern about “surveillance capitalism,” whereby for-profit companies generate value from data, while individuals are unable to resist (Zuboff 2019). Non-profits using data-enabled surveillance receive less attention. Higher education institutions (HEIs) have embraced data analytics, but the wide latitude that private, profit-oriented enterprises have to collect data is inappropriate. HEIs have a fiduciary relationship to students, not a narrowly transactional one (see Jones et al, forthcoming). They are responsible for facets of student life beyond (...) education. In addition to classrooms, learning management systems, and libraries, HEIs manage dormitories, gyms, dining halls, health facilities, career advising, police departments, and student employment. HEIs collect and use student data in all of these domains, ostensibly to understand learner behaviors and contexts, improve learning outcomes, and increase institutional efficiency through “learning analytics” (LA). ID card swipes and Wi-Fi log-ins can track student location, class attendance, use of campus facilities, eating habits, and friend groups. Course management systems capture how students interact with readings, video lectures, and discussion boards. Application materials provide demographic information. These data are used to identify students needing support, predict enrollment demands, and target recruiting efforts. These are laudable aims. However, current LA practices may be inconsistent with HEIs’ fiduciary responsibilities. HEIs often justify LA as advancing student interests, but some projects advance primarily organizational welfare and institutional interests. Moreover, LA advances a narrow conception of student interests while discounting privacy and autonomy. Students are generally unaware of the information collected, do not provide meaningful consent, and express discomfort and resigned acceptance about HEI data practices, especially for non-academic data (see Jones et al. forthcoming). The breadth and depth of student information available, combined with their fiduciary responsibility, create a duty that HEIs exercise substantial restraint and rigorous evaluation in data collection and use. (shrink)

A multitude of legislation impacts the use of samples and data for research in South Africa. With the coming into effect of the Protection of Personal Information Act No. 4 of 2013 in July 2021, recent attention has been given to safeguarding research participants’ personal information. The protection of participants’ privacy in research is essential, but it is not the only risk at stake in the use and sharing of personal information. Other rights and interests that must also be (...) considered and safeguarded include the right to non-discrimination, the right to dignity, and the right to enjoy the benefits of scientific progress. This can be achieved by ensuring that the ethical values and universal principles that underpin the research landscape, namely equity, reciprocity, justice and solidarity, are embedded in the regulatory framework for the management and use of personal information. This paper advocates an integrated bioethics approach to the use of personal information for research in SA. A key feature in embedding such an approach is a Data Transfer Agreement that appropriately integrates the safeguards and protections set out by our regulatory framework with bioethical rules and procedures when personal information is used and shared for research purposes. This paper thus calls for the development of a national DTA that is guided by key ethical principles when data are shared for research purposes. This paper will be followed by a webinar on 23 June 2022 hosted by the Department of Science and Innovation and the SA Medical Research Council, where the recommendations and suggestions set out herein will be unpacked, discussed and debated by relevant stakeholders. (shrink)

This theme issue has the founding ambition of landscaping Data Ethics as a new branch of ethics that studies and evaluates moral problems related to data (including generation, recording, curation, processing, dissemination, sharing, and use), algorithms (including AI, artificial agents, machine learning, and robots), and corresponding practices (including responsible innovation, programming, hacking, and professional codes), in order to formulate and support morally good solutions (e.g. right conducts or right values). Data Ethics builds on the (...) foundation provided by Computer and Information Ethics but, at the same time, it refines the approach endorsed so far in this research field, by shifting the Level of Abstraction of ethical enquiries, from being information-centric to being data-centric. This shift brings into focus the different moral dimensions of all kinds of data, even the data that never translate directly into information but can be used to support actions or generate behaviours, for example. It highlights the need for ethical analyses to concentrate on the content and nature of computational operations — the interactions among hardware, software, and data — rather than on the variety of digital technologies that enables them. And it emphasises the complexity of the ethical challenges posed by Data Science. Because of such complexity, Data Ethics should be developed from the start as a macroethics, that is, as an overall framework that avoids narrow, ad hoc approaches and addresses the ethical impact and implications of Data Science and its applications within a consistent, holistic, and inclusive framework. Only as a macroethics Data Ethics will provide the solutions that can maximise the value of Data Science for our societies, for all of us, and for our environments. (shrink)

This paper presents an ethical framework designed to support the development of critical data literacy for research methods courses and data training programmes in higher education. The framework we present draws upon our reviews of literature, course syllabi and existing frameworks on data ethics. For this research we reviewed 250 research methods syllabi from across the disciplines, as well as 80 syllabi from data science programmes to understand how or if data ethics was (...) taught. We also reviewed 12 data ethics frameworks drawn from different sectors. Finally, we reviewed an extensive and diverse body of literature about data practices, research ethics, data ethics and critical data literacy, in order to develop a transversal model that can be adopted across higher education. To promote and support ethical approaches to the collection and use of data, ethics training must go beyond securing informed consent to enable a critical understanding of the techno-centric environment and the intersecting hierarchies of power embedded in technology and data. By fostering ethics as a method, educators can enable research that protects vulnerable groups and empower communities. (shrink)

In discourses on digitization and the data economy, it is often claimed that data subjects shall beownersof their data. In this paper, we provide a problem diagnosis for such calls fordata ownership: a large variety of demands are discussed under this heading. It thus becomes challenging to specify what—if anything—unites them. We identify four conceptual dimensions of calls for data ownership and argue that these help to systematize and to compare different positions. In view of this (...) pluralism of data ownership claims, we introduce, spell out and defend a constructive interpretative proposal: claims for data ownership are charitably understood as attempts to call for theredistributionof material resources and the socio-culturalrecognitionof data subjects. We argue that as one consequence of this reading, it misses the point to reject claims for data ownership on the grounds that property in data does not exist. Instead, data ownership brings to attention a claim to renegotiate such aspects of thestatus quo. (shrink)

The speed of development in Big Data and associated phenomena, such as social media, has surpassed the capacity of the average consumer to understand his or her actions and their knock-on effects. We are moving towards changes in how ethics has to be perceived: away from individual decisions with specific and knowable outcomes, towards actions by many unaware that they may have taken actions with unintended consequences for anyone. Responses will require a rethinking of ethical choices, the lack (...) thereof and how this will guide scientists, governments, and corporate agencies in handling Big Data. This essay elaborates on the ways Big Data impacts on ethical conceptions. (shrink)

This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law (...) and medicine, truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (shrink)

Personal data protection is an ethical issue. In this study we analyzed how research ethics committees (RECs) and data protection officers (DPOs) handle personal data protection issues in research protocols. We conducted a mixed-methods study. We included heads (or delegated representatives) of RECs and DPOs from universities and public research institutes in Croatia. The participants provided information about data protection issues in research and their mutual collaboration on those issues through structured interviews that contained closed (...) and open-ended questions. Qualitative description was used to analyze open-ended questions. The results showed that 55% of the REC representatives were not aware who was DPO in their institution. Among RECs, 65% never contacted the DPO. There were 61% of RECs who reported that they received no training from the organization on personal data protection. When asked about barriers to personal data protection in their institutions, 26% of REC members highlighted the lack of a clear protocol for assessing personal data protection issues, while 30% of DPOs mentioned lack of knowledge among researchers about personal data. In conclusion, we found that when it came to protecting personal data in research protocols, RECs and DPOs hardly ever worked together. When developing future personal data protection policies for academic and scientific research institutions, it is essential that RECs and DPOs should collaborate and both continue to expand/update their knowledge on personal data protection procedures. (shrink)

This chapter addresses the morality of two types of national security electronic surveillance (SIGINT) programs: the analysis of communication “metadata” and dragnet searches for keywords in electronic communication. The chapter develops a standard for assessing coercive government action based on respect for the autonomy of inhabitants of liberal states and argues that both types of SIGINT can potentially meet this standard. That said, the collection of metadata creates opportunities for abuse of power, and so judgments about the trustworthiness and competence (...) of the government engaging in the collection must be made in order to decide whether metadata collection is justified in a particular state. Further, the moral standard proposed has a reflexive element justifying adversary states’ intelligence collection against one another. Therefore, high-tech forms of SIGINT can only be justified at the cost of justifying cruder versions of signals intelligence collection practiced by a state’s less-advanced adversaries. (shrink)

Ethics is a foundational competency in healthcare inherent in everyday nursing practice. Therefore, the promotion of qualified nurses’ and nursing students’ moral competence is essential to ensure ethically high-quality and sustainable healthcare. The aim of this integrative literature review is to identify the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence. The review has been registered in PROSPERO (CRD42023386947) and reported according to the PRISMA guideline. Focusing on qualified nurses’ and nursing students’ moral competence, (...) a literature search was undertaken in January 2023 in six scientific databases: CINAHL, Cochrane Library, PsycINFO, PubMed Medline, Scopus and Web of Science. Empirical studies written in English without time limitation were eligible for inclusion. A total of 29 full texts were retrieved and included out of 5233 citations. Quality appraisal was employed using Joanna Briggs Institute checklists and the Mixed Method Appraisal Tool. Data were analysed using inductive content analysis. Research about the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence is limited and mainly explored using descriptive research designs. The contributing factors were identified as comprising two main categories: (1) human factors, consisting of four categories: individual, social, managerial and professional factors, and ten sub-categories; and (2) structural factors, consisting of four categories: educational, environmental, organisational and societal factors, and eight sub-categories. This review provides knowledge about the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence for the use of researchers, nurse educators, managers, organisations and policymakers. More research about the contributing factors is needed using complex intervention, implementation and multiple methods designs to ensure ethically sustainable healthcare. (shrink)

Data sharing – broadly defined as the exchange of health-related data among multiple controllers and processors – has gained increased relevance in the health sciences over recent years as the need and demand for collaboration has increased. This includes data obtained through healthcare provisions, clinical trials, observational studies, public health surveillance programs, and other data collection methods. The practice of data sharing presents several notable challenges, however. Compliance with a complex and dynamic regulatory framework is (...) essential, with the General Data Protection Regulation being a prominent example in a European context. Recent regulatory developments related to clinical trial transparency, trade secrecy, data access, AI training data, and health data spaces further contribute to the difficulties. Simultaneously, government initiatives often encourage scientists to embrace principles of “open data” and “open innovation.” The variety of regulations in this domain has the potential to impede widespread data sharing and hinder innovation. This edited volume, therefore, compiles comparative case studies authored by leading scholars from diverse disciplines and jurisdictions. The book aims to outline the legal complexities of data sharing. By examining real-world scenarios from diverse disciplines and a global perspective, it explores the normative, policy, and ethical dilemmas that surround data sharing in the health sciences today. Chapter Patient Perspectives on Data Sharing, Chapter Supplementary Measures and Appropriate Safeguards for International Transfers of Health Data after Schrems II are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com. (shrink)

A self-perceived lack of training in ethical theories and related pedagogy has kept many engineering faculty members from teaching data ethics, an important aspect of engineering research that has become more salient in recent years. This paper describes the development of a module, which includes concepts, cases, policies, and best practices, to support the teaching of ethical data practice. Based on a user-oriented design approach and a moral literacy framework, the module was designed to be used in (...) different courses and co-curricular activities for students of varying levels of competence to improve their ability to identify and analyze ethical problems associated with the handling of research data. This work seeks to encourage ethical reflection on researchers’ data practice through the idea of an “ecology of data,” which highlights the co-production of data by multiple, interconnected, and heterogeneous actors. This paper also presents online and in-class evidence about the impact and limitations of the module, which is now available for interested researchers and instructors to browse and use. (shrink)

While open science gains prominence in South Africa with the encouragement of open data sharing for research purposes, there are stricter laws and regulations around privacy – and specifically the use, management and transfer of personal information – to consider. The Protection of Personal Information Act No. 4 of 2013 (POPIA), which came into effect in 2021, established stringent requirements for the processing of personal information and has changed the regulatory landscape for the transfer of personal information across South (...) African borders. At the same time, draft national policies on open science encourage wide accessibility to data and open data sharing in line with international best practice. As a result, the operation of research ethics committees (RECs) in South Africa is affected by the conflicting demands of the shift towards open science on the one hand, and the stricter laws protecting participants’ personal information and the transfer thereof, on the other. This article explores the continuing evolving role of RECs in the era of open data and recommends the development of a data transfer agreement (DTA) for the ethical management of personal health information, considering the challenges that RECs encounter, which centres predominantly on privacy, data sharing and access concerns following advances in genetic and genomic research and biobanking. (shrink)

This open access book explains how leading business organizations attempt to achieve the responsible and ethical use of artificial intelligence (AI) and other advanced information technologies. These technologies can produce tremendous insights and benefits. But they can also invade privacy, perpetuate bias, and otherwise injure people and society. To use these technologies successfully, organizations need to implement them responsibly and ethically. The question is: how to do this? Data ethics management, and this book, provide some answers. -/- The (...) authors interviewed and surveyed data ethics managers at leading companies. They asked why these experts see data ethics as important and how they seek to achieve it. This book conveys the results of that research on a concise, accessible way. -/- Much of the existing writing on data and AI ethics focuses either on macro-level ethical principles, or on micro-level product design and tooling. The interviews showed that companies need a third component: data ethics management. This third element consists of the management structures, processes, training and substantive benchmarks that companies use to operationalize their high-level ethical principles and to guide and hold accountable their developers. Data ethics management is the connective tissue makes ethical principles real. It is the focus of this book. -/- This book should be of use to organizations that wish to improve their own data ethics management efforts, legislators and policymakers who hope to build on existing management practices, scholars who study beyond compliance business behavior, and members of the public who want to understand better the threats that AI poses and how to reduce them. (shrink)

In this review, we present some ethical imperatives observed in this pandemic from a data ethics perspective. Our exposition connects recurrent ethical problems in the discipline, such as, privacy, surveillance, transparency, accountability, and trust, to broader societal concerns about equality, discrimination, and justice. We acknowledge data ethics role as significant to develop technological, inclusive, and pluralist societies. - - - Resumen: En esta revisión, exponemos algunos de los imperativos éticos observados desde la ética de datos en (...) esta pandemia. Nuestra exposición busca conectar problemas éticos típicos dentro de esta disciplina, a saber, privacidad, vigilancia, transparencia, responsabilidad y confianza, con preocupaciones a nivel social relacionadas con la igualdad, discrimi nación y justicia. Consideramos que la ética de datos tiene un rol significativo para desarrollar sociedades tecnificadas, inclusivas y pluralistas. (shrink)

At the beginning of the COVID-19 pandemic, high hopes were placed on digital contact tracing. Digital contact tracing apps can now be downloaded in many countries, but as further waves of COVID-19 tear through much of the northern hemisphere, these apps are playing a less important role in interrupting chains of infection than anticipated. We argue that one of the reasons for this is that most countries have opted for decentralised apps, which cannot provide a means of rapidly informing users (...) of likely infections while avoiding too many false positive reports. Centralised apps, in contrast, have the potential to do this. But policy making was influenced by public debates about the right app configuration, which have tended to focus heavily on privacy, and are driven by the assumption that decentralised apps are “privacy preserving by design”. We show that both types of apps are in fact vulnerable to privacy breaches, and, drawing on principles from safety engineering and risk analysis, compare the risks of centralised and decentralised systems along two dimensions, namely the probability of possible breaches and their severity. We conclude that a centralised app may in fact minimise overall ethical risk, and contend that we must reassess our approach to digital contact tracing, and should, more generally, be cautious about a myopic focus on privacy when conducting ethical assessments of data technologies. (shrink)

This work has been selected by scholars as being culturally important, and is part of the knowledge base of civilization as we know it. This work was reproduced from the original artifact, and remains as true to the original work as possible. Therefore, you will see the original copyright references, library stamps (as most of these works have been housed in our most important libraries around the world), and other notations in the work.This work is in the public domain in (...) the United States of America, and possibly other nations. Within the United States, you may freely copy and distribute this work, as no entity (individual or corporate) has a copyright on the body of the work.As a reproduction of a historical artifact, this work may contain missing or blurred pages, poor pictures, errant marks, etc. Scholars believe, and we concur, that this work is important enough to be preserved, reproduced, and made generally available to the public. We appreciate your support of the preservation process, and thank you for being an important part of keeping this knowledge alive and relevant. (shrink)

The temptation to use prospective observational studies (POS) instead of conducting difficult trials (RCTs) has always existed, but with the advent of powerful computers and large databases, it can become almost irresistible. We examine the potential consequences, were this to occur, by comparing two hypothetical studies of a new treatment: one RCT, and one POS. The POS inevitably submits more patients to inferior research methodology. In RCTs, patients are clearly informed of the research context, and 1:1 randomized allocation between experimental (...) and validated treatment balances risks for each patient. In POS, for each patient, the risks of receiving inferior treatment are impossible to estimate. The research context and the uncertainty are down-played, and patients and clinicians are at risk of becoming passive research subjects in studies performed from an outsider’s view, which potentially has extraneous objectives, and is conducted without their explicit, autonomous, and voluntary involvement and consent. (shrink)

The Catholic moral tradition has a rich foundation that applies broadly to encompass all areas of human experience. Yet, there is comparatively little in Catholic thought on the ethics of the collection and use of data, especially in healthcare. We provide here a brief overview of terminology, concepts, and applications of data in the context of healthcare, summarize relevant theological principles and themes (including the Vatican’s Rome Call for AI Ethics), and offer key questions for ethicists (...) and data managers to consider as they analyze ethical implications pertinent to data governance and data management. (shrink)

Data science, and the related field of big data, is an emerging discipline involving the analysis of data to solve problems and develop insights. This rapidly growing domain promises many benefits to both consumers and businesses. However, the use of big data analytics can also introduce many ethical concerns, stemming from, for example, the possible loss of privacy or the harming of a sub-category of the population via a classification algorithm. To help address these potential ethical (...) challenges, this paper maps and describes the main ethical themes that were identified via systematic literature review. It then identifies a possible structure to integrate these themes within a data science project, thus helping to provide some structure in the on-going debate with respect to the possible ethical situations that can arise when using data science analytics. (shrink)

In this paper we argue the need to reimagine research ethics frameworks to include notions of environmental sustainability. While there have long been calls for healthcareethics frameworks and decision-making to include aspects of sustainability, less attention has focused on howresearchethics frameworks could address this. To do this, we first describe the traditional approach to research ethics, which often relies on individualised notions of risk. We argue that we need to broaden this notion of individual risk to consider issues (...) associated with environmental sustainability. This is because research is associated with carbon emissions and other environmental impacts, both of which cause climate change health hazards. We introduce how bioethics frameworks have considered notions of environmental sustainability and draw on these to help develop a framework suitable for researchers. We provide a case study of data-driven health research to apply our framework. (shrink)

Data analytics and data-driven approaches in Machine Learning are now among the most hailed computing technologies in many industrial domains. One major application is predictive analytics, which is used to predict sensitive attributes, future behavior, or cost, risk and utility functions associated with target groups or individuals based on large sets of behavioral and usage data. This paper stresses the severe ethical and data protection implications of predictive analytics if it is used to predict sensitive information (...) about single individuals or treat individuals differently based on the data many unrelated individuals provided. To tackle these concerns in an applied ethics, first, the paper introduces the concept of “predictive privacy” to formulate an ethical principle protecting individuals and groups against differential treatment based on Machine Learning and Big Data analytics. Secondly, it analyses the typical data processing cycle of predictive systems to provide a step-by-step discussion of ethical implications, locating occurrences of predictive privacy violations. Thirdly, the paper sheds light on what is qualitatively new in the way predictive analytics challenges ethical principles such as human dignity and the (liberal) notion of individual privacy. These new challenges arise when predictive systems transform statistical inferences, which provide knowledge about the cohort of training data donors, into individual predictions, thereby crossing what I call the “prediction gap”. Finally, the paper summarizes that data protection in the age of predictive analytics is a collective matter as we face situations where an individual’s (or group’s) privacy is violated using dataotherindividuals provide about themselves, possibly even anonymously. (shrink)

There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication. This expectation recognizes the enormous benefits of data collected and created for research purposes being made available for secondary uses, as open science gains increasing support. This is particularly so in the context of big data, especially where health data is involved. There are, however, also challenges relating to (...) the collection, storage, and re-use of research data. This paper gives a brief overview of the landscape of data sharing via data repositories and discusses some of the key ethical issues raised by the sharing of health-related research data, including expectations of privacy and confidentiality, the transparency of repository governance structures, access restrictions, as well as data ownership and the fair attribution of credit. To consider these issues and the values that are pertinent, the paper applies the deliberative balancing approach articulated in the Ethics Framework for Big Data in Health and Research to the domain of Openness in Big Data and Data Repositories. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. (shrink)

Artificial intelligence is set to transform healthcare. Key ethical issues to emerge with this transformation encompass the accountability and transparency of the decisions made by AI-based systems, the potential for group harms arising from algorithmic bias and the professional roles and integrity of clinicians. These concerns must be balanced against the imperatives of generating public benefit with more efficient healthcare systems from the vastly higher and accurate computational power of AI. In weighing up these issues, this paper applies the deliberative (...) balancing approach of the Ethics Framework for Big Data in Health and Research. The analysis applies relevant values identified from the framework to demonstrate how decision-makers can draw on them to develop and implement AI-assisted support systems into healthcare and clinical practice ethically and responsibly. Please refer to Xafis et al. in this special issue of the Asian Bioethics Review for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end of this paper. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating (...) to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model (...) for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests. (shrink)

Omitting experimental data is often considered a violation of scientific integrity. If we consider experimental inquiry as a questioning process, omitting data is seen to be merely an example of tentatively rejecting (‘bracketing’) some of nature’s answers. Such bracketing is not only occasionally permissible; sometimes it is mandated by optimal interrogative strategies. When to omit data is therefore a strategic rather than ethical question. These points are illustrated by reference to Millikan’s oil drop experiment.

An Introduction to data ethics, focusing on questions of privacy and personal identity in the economic world as it is defined by big data technologies, artificial intelligence, and algorithmic capitalism. -/- Originally published in The Business Ethics Workshop, 3rd Edition, by Boston Acacdemic Publishing / FlatWorld Knowledge.

The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine”. The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a (...) new vision of care. Molecular tumor boards are one response to these changes and are now providing better access to next-generation sequencing and new cancer treatments to patients with inoperable or metastatic cancers, and those for whom the usual treatment has failed. However, MTB face a crucial ethical challenge: maintaining and improving the trust of patients, clinicians, researchers and industry in academic medical centers supported by private or public funding rather than providing genetic data directly to private companies. We believe that, in this era of DM, appropriate modern digital communication networks will be required to maintain this trust and to improve the organization and effectiveness of the system. There is, therefore, a need to reconsider the form and content of informed consent documents at all academic medical centers and to introduce dynamic and electronic informed consent. (shrink)

Discussion of uses of biomedical data often proceeds on the assumption that the data are generated and shared solely or largely within the health sector. However, this assumption must be challenged because increasingly large amounts of health and well-being data are being gathered and deployed in cross-sectoral contexts such as social media and through the internet of things and wearable devices. Cross-sectoral sharing of data thus refers to the generation, use and linkage of biomedical data (...) beyond the health sector. This paper considers the challenges that arise from this phenomenon. If we are to benefit fully, it is important to consider which ethical values are at stake and to reflect on ways to resolve emerging ethical issues across ecosystems where values, laws and cultures might be quite distinct. In considering such issues, this paper applies the deliberative balancing approach of the Ethics Framework for Big Data in Health and Research to the domain of cross-sectoral big data. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. (shrink)

This study focuses on examining the thematic landscape of the history of scholarly publication in business ethics. We analyze the titles, abstracts, full texts, and citation information of all research papers published in the field’s leading journal, the Journal of Business Ethics, from its inaugural issue in February 1982 until December 2016—a dataset that comprises 6308 articles and 42 million words. Our key method is a computational algorithm known as probabilistic topic modeling, which we use to examine objectively (...) the field’s latent thematic landscape based on the vast volume of scholarly texts. This “big-data” approach allows us not only to provide time-specific snapshots of various research topics, but also to track the dynamic evolution of each topic over time. We further examine the pattern of individual papers’ topic diversity and the influence of individual papers’ topic diversity on their impact over time. We conclude this study with our recommendation for future studies in business ethics research. (shrink)

This paper illustrates the overlap of computer ethics and business ethics by examining two issues. The first is the lack of fit between digitalized information and copyright protection. Although there are moral arguments that can be used to justify protection of intellectual property, including computer software and digitalized data, the way that copyright protection has developed often reflects vested interests rather than the considered weighing of moral considerations. As a result, with respect to downloading MP3s, among (...) other material, what is ethical is largely determined by the appropriately passed laws in each jurisdiction, and what is ethically permissible in one jurisdiction may be ethically impermissible in another. The second issue is the outsourcing of IT jobs from the U.S. While the practice has been politicized, examining it from an all-things-considered perspective, this paper argues it is ethically justified. (shrink)