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)

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)

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 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 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)

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)

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 digital revolution has disruptively reshaped the way health services are provided and how research is conducted. This transformation has produced novel ethical challenges. The digitalization of...

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.

McCoy and colleagues (2023) offer a reflective framework for data ethics and governance with several historical bioethics principles as a foundation. Their framework is one among a plethora of othe...

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)

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)

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)

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)

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)

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)

Tuberculosis (TB) is a potentially fatal infectious disease that, in Aotearoa New Zealand (NZ), inequitably affects Asian, Pacific, Middle Eastern, Latin American, and African (MELAA), and Māori people. Medical research involving genome sequencing of TB samples enables more nuanced understanding of disease strains and their transmission. This could inform highly specific health interventions. However, the collection and management of TB isolate samples for research are currently informed by monocultural biomedical models often lacking key ethical considerations. Drawing on a qualitative kaupapa (...) Māori–consistent study, this paper reports on preliminary discussions with groups of Māori, Pacific, and Afghan people in NZ, whose communities have been harmed by TB and TB stigma. Participants’ discussions highlight key concerns and meanings that ought to inform the development of guidelines and a more robust consultative process for the governance of how TB isolate samples are collected and used both retrospectively and in future research. We argue for ethical processes to be culturally nuanced and community-generated, flexible and meaningful, and situated in relation to the physical and symbolic effects of TB. We discuss the significance of Indigenous data sovereignty, rights, and kāwanatanga (governorship) in shaping a multicultural data sovereignty model. (shrink)

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 20 Heft: 1 Seiten: 277-288.

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.

Data science skills are rapidly becoming a necessity in modern science. In response to this need, institutions and organizations around the world are developing research data science curricula to teach the programming and computational skills that are needed to build and maintain data infrastructures and maximize the use of available data. To date, however, few of these courses have included an explicit ethics component, and developing such components can be challenging. This paper describes a novel (...) approach to teaching data ethics on short courses developed for the CODATA-RDA Schools for Research Data Science. The ethics content of these schools is centred on the concept of open and responsible science citizenship that draws on virtue ethics to promote ethics of practice. Despite having little formal teaching time, this concept of citizenship is made central to the course by distributing ethics content across technical modules. Ethics instruction consists of a wide range of techniques, including stand-alone lectures, group discussions and mini-exercises linked to technical modules. This multi-level approach enables students to develop an understanding both of “responsible and open science citizenship”, and of how such responsibilities are implemented in daily research practices within their home environment. This approach successfully locates ethics within daily data science practice, and allows students to see how small actions build into larger ethical concerns. This emphasises that ethics are not something “removed from daily research” or the remit of data generators/end users, but rather are a vital concern for all data scientists. (shrink)

The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of (...) the ethical implications of Big Data lags behind. In order to bridge such a gap, this article systematically and comprehensively analyses academic literature concerning the ethical implications of Big Data, providing a watershed for future ethical investigations and regulations. Particular attention is paid to biomedical Big Data due to the inherent sensitivity of medical information. By means of a meta-analysis of the literature, a thematic narrative is provided to guide ethicists, data scientists, regulators and other stakeholders through what is already known or hypothesised about the ethical risks of this emerging and innovative phenomenon. Five key areas of concern are identified: informed consent, privacy, ownership, epistemology and objectivity, and ‘Big Data Divides’ created between those who have or lack the necessary resources to analyse increasingly large datasets. Critical gaps in the treatment of these themes are identified with suggestions for future research. Six additional areas of concern are then suggested which, although related have not yet attracted extensive debate in the existing literature. It is argued that they will require much closer scrutiny in the immediate future: the dangers of ignoring group-level ethical harms; the importance of epistemology in assessing the ethics of Big Data; the changing nature of fiduciary relationships that become increasingly data saturated; the need to distinguish between ‘academic’ and ‘commercial’ Big Data practices in terms of potential harm to data subjects; future problems with ownership of intellectual property generated from analysis of aggregated datasets; and the difficulty of providing meaningful access rights to individual data subjects that lack necessary resources. Considered together, these eleven themes provide a thorough critical framework to guide ethical assessment and governance of emerging Big Data practices. (shrink)

After a brief overview of ethical issues in an Australian context catalyzed by the current pandemic, this article focuses on data protection in the light of recent debates about COVID-19 data tracking in Australia and globally. This article looks at the issue of trust as a fundamental principle of effective and ethical COVID-safe measures undertaken by the government. Key to ensuring such trust are Habermasian participatory dialogs, which assume trust as a condition of authentic illocution, and an emphasis (...) on short-term data capture. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the (...) Science, Health and Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. -/- Today, it is (...) easy to donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. -/- Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. (shrink)

Big data, big impact -- Values and actions -- Current practices -- Aligning values and actions.

Die sekundäre Forschungsnutzung von Behandlungsdaten hat großes Potenzial, biomedizinisches Wissen zu erweitern und die Patientenversorgung zu verbessern. Gleichzeitig sind für eine bessere Ausschöpfung dieses Potenzials diverse Herausforderungen zu bewältigen. Dies gilt insbesondere in Deutschland, wo im Vergleich zu anderen Ländern, wie z.B. Dänemark oder Finnland, die sekundäre Forschungsnutzung von Behandlungsdaten unterentwickelt ist. Die Intensivierung der Nutzung der Daten aus Diagnose und Therapie von Patienten und die Entwicklung der dafür notwendigen Strukturen in Deutschland ist ethisch und politisch geboten: für die Verbesserung (...) der Gesundheitsversorgung durch neue Erkenntnisse, Therapien und Qualitätssicherung. Aus diesem Grund fordern die Autor:innen alle Akteure des Gesundheitssystems, von der Bundes- und den Landesregierungen über die Krankenkassen, Kliniken, Ärzt:innen und Patient:innen dazu auf, einen Beitrag dazu leisten, eine Kultur der sekundären Forschungsnutzung von Behandlungsdaten zu etablieren. Basierend auf den Ergebnissen eines dreijährigen Verbundprojekts beantworten die Autor:innen aus den Bereichen Medizin, Rechtswissenschaften, Ethik und Sozialwissenschaften die Frage was notwendig ist, damit in Deutschland die Daten von Patient:innen systematisch für medizinische Forschung und die Analyse der klinischen Versorgungsqualität verwendet werden können und wirklich auch verwendet werden. Sie nennen zehn zentrale Forderungen und legen eine Liste von 23 Empfehlungen mit konkreten Maßnahmen vor, welche von den genannten Akteuren umgesetzt werden sollten. (shrink)

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST (...) Action CHIP ME ‘Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives’ identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research. We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment. (shrink)

It has become increasingly difficult for individuals to exercise meaningful control over the personal data they disclose to companies or to understand and track the ways in which that data is exchanged and used. These developments have led to an emerging consensus that existing privacy and data protection laws offer individuals insufficient protections against harms stemming from current data practices. However, an effective and ethically justified way forward remains elusive. To inform policy in this area, we (...) propose the Ethical Data Practices framework. The framework outlines six principles relevant to the collection and use of personal data—minimizing harm, fairly distributing benefits and burdens, respecting autonomy, transparency, accountability, and inclusion—and translates these principles into action-guiding practical imperatives for companies that process personal data. In addition to informing policy, the practical imperatives can be voluntarily adopted by companies to promote ethical data practices. (shrink)

Web mining refers to the whole of data miningand related techniques that are used toautomatically discover and extract informationfrom web documents and services. When used in abusiness context and applied to some type ofpersonal data, it helps companies to builddetailed customer profiles, and gain marketingintelligence. Web mining does, however, pose athreat to some important ethical values likeprivacy and individuality. Web mining makes itdifficult for an individual to autonomouslycontrol the unveiling and dissemination of dataabout his/her private life. To study (...) thesethreats, we distinguish between `content andstructure mining' and `usage mining.' Webcontent and structure mining is a cause forconcern when data published on the web in acertain context is mined and combined withother data for use in a totally differentcontext. Web usage mining raises privacyconcerns when web users are traced, and theiractions are analysed without their knowledge.Furthermore, both types of web mining are oftenused to create customer files with a strongtendency of judging and treating people on thebasis of group characteristics instead of ontheir own individual characteristics and merits(referred to as de-individualisation). Althoughthere are a variety of solutions toprivacy-problems, none of these solutionsoffers sufficient protection. Only a combinedsolution package consisting of solutions at anindividual as well as a collective level cancontribute to release some of the tensionbetween the advantages and the disadvantages ofweb mining. The values of privacy andindividuality should be respected and protectedto make sure that people are judged and treatedfairly. People should be aware of theseriousness of the dangers and continuouslydiscuss these ethical issues. This should be ajoint responsibility shared by web miners (bothadopters and developers), web users, andgovernments. (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)

This book presents cutting edge research on the new ethical challenges posed by biomedical Big Data technologies and practices. 'Biomedical Big Data' refers to the analysis of aggregated, very large datasets to improve medical knowledge and clinical care. The book describes the ethical problems posed by aggregation of biomedical datasets and re-use/re-purposing of data, in areas such as privacy, consent, professionalism, power relationships, and ethical governance of Big Data platforms. Approaches and methods are discussed that can (...) be used to address these problems to achieve the appropriate balance between the social goods of biomedical Big Data research and the safety and privacy of individuals. Seventeen original contributions analyse the ethical, social and related policy implications of the analysis and curation of biomedical Big Data, written by leading experts in the areas of biomedical research, medical and technology ethics, privacy, governance and data protection. The book advances our understanding of the ethical conundrums posed by biomedical Big Data, and shows how practitioners and policy-makers can address these issues going forward. (shrink)

One of the core goals of Digital Health Technologies (DHT) is to transform healthcare services and delivery by shifting primary care from hospitals into the community. However, achieving this goal will rely on the collection, use and storage of large datasets. Some of these datasets will be linked to multiple sources, and may include highly sensitive health information that needs to be transferred across institutional and jurisdictional boundaries. The growth of DHT has outpaced the establishment of clear legal pathways to (...) facilitate the collection, use and transfer of potentially sensitive health data. Our study aimed to address this gap with an ethical code to guide researchers developing DHT with international collaborative partners in Singapore. We generated this code using a modified Policy Delphi process designed to engage stakeholders in the deliberation of health data ethics and governance. This paper reports the outcomes of this process along with the key components of the code and identifies areas for future research. (shrink)

Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means (...) for consent, the importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices. (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 previous works (Floridi 2018) I introduced the distinction between hard ethics (which may broadly be described as what is morally right and wrong independently of whether something is legal or illegal), and soft or post-compliance ethics (which focuses on what ought to be done over and above existing legislation). This paper analyses the applicability of soft ethics to the General Data Protection Regulation and advances the theory that soft ethics has a dual advantage—as both (...) an opportunity strategy and a risk management solution. (shrink)

Purpose The purpose of this paper is to review current practice in sharing and mining medical data revealing benefits, costs and ethical issues. Based on stakeholder perspectives and values, the authors create an ethical code to regulate the sharing and mining of medical information. Design/methodology/approach The framework is based on a review of academic, practitioner and legal research. Findings Owing to the inability of current safeguards to protect consumers from risks related to the disclosure of medical information, the authors (...) develop a framework for ethical sharing and mining of medical data, security, transparency, respect, accountability, community and quality, which espouses security, transparency, respect, accountability, community and quality as the basic tenets of ethical data sharing and mining practice. Research limitations/implications The STRACQ framework is an original, previously unpublished contribution that will require modification over time based on discussion and debate within and among the academy, medical community and public policymakers. Social implications The framework for sharing borrows from the Fair Credit Reporting Act, allowing the collection and dissemination of identified medical data but placing strict limitations on use. Following this framework, benefits of shared and mined medical data are freely available with appropriate safeguards for consumer privacy. Originality/value Mandates for adoption of electronic health-care records require an understanding of medical data mining. This paper presents a review of data mining techniques and reasons for engaging in the practice of identifying benefits, costs and ethical issues. The authors create an original framework, STRACQ, for ethical sharing and mining of medical information, allowing knowledge exploration while protecting consumer privacy. (shrink)

As big data techniques become widespread in journalism, both as the subject of reporting and as newsgathering tools, the ethics of data science must inform and be informed by media ethics. This article explores emerging problems in ethical research using big data techniques. It does so using the duty-based framework advanced by W.D. Ross, who has significantly influenced both research science and media ethics. A successful framework must provide stability and flexibility. Without stability, ethical (...) precommitments will vanish as technology rapidly shifts costs. Without flexibility, traditional approaches will rapidly become obsolete in the face of technological change. The article concludes that Ross's duty-based approach both provides stability in the face of rapid technological change and flexibility to innovate to achieve the original purpose of basic ethical principles. (shrink)

Ethical problems are related to computer data bases, containing data on individuals and groups of persons, as well as to computer knowledge bases, containing general rules and elements of expert systems.In the present essay the following conclusions are made regarding computer data bases: privacy, security, and confidentiality of medical computer data bases should be ensured. This duty should rest with physicians in hospitals. The principle of informed consent should be applied to gathering information which is to (...) be stored and processed by computers. Information stored in computer data bases should not be used for purposes for which the subjects (patients as well as personnel) have not given their consent. In order to decrease the possibility of misuses of medical data bases containing information on individuals, these registers should not be linked to other central data bases. (shrink)

Data infrastructure includes the bureaucratic, technical, and social mechanisms that assist in actions like data management, analysis, storage, and sharing. While issues like data sharing have been addressed in depth in bioethical literature, data infrastructure presents its own ethical considerations, apart from the actions (such as data sharing and data analysis) that it enables. This essay outlines some of these considerations—namely, the ethics of efficiency, the visibility of infrastructure, the power of standards, and (...) the impact of new technologies—in order to invite the bioethics community to participate in conversations about infrastructure, as their expertise is both needed and welcomed. (shrink)

Ethicists differ considerably in their reasons for using empirical data. This paper presents a brief overview of four traditional approaches to the use of empirical data: “the prescriptive applied ethicists,” “the theorists,” “the critical applied ethicists,” and “the particularists.” The main aim of this paper is to introduce a fifth approach of more recent date (i.e. “integrated empirical ethics”) and to offer some methodological directives for research in integrated empirical ethics. All five approaches are presented in (...) a table for heuristic purposes. The table consists of eight columns: “view on distinction descriptive-prescriptive sciences,” “location of moral authority,” “central goal(s),” “types of normativity,” “use of empirical data,” “method,” “interaction empirical data and moral theory,” and “cooperation with descriptive sciences.” Ethicists can use the table in order to identify their own approach. Reflection on these issues prior to starting research in empirical ethics should lead to harmonization of the different scientific disciplines and effective planning of the final research design. Integrated empirical ethics (IEE) refers to studies in which ethicists and descriptive scientists cooperate together continuously and intensively. Both disciplines try to integrate moral theory and empirical data in order to reach a normative conclusion with respect to a specific social practice. IEE is not wholly prescriptive or wholly descriptive since IEE assumes an interdepence between facts and values and between the empirical and the normative. The paper ends with three suggestions for consideration on some of the future challenges of integrated empirical ethics. (shrink)

Faced with the exponential development of Big Data and both its legal and economic repercussions, we are still slightly in the dark concerning the use of digital information. In the perpetual balance between confidentiality and transparency, this data will lead us to call into question how we understand certain paradigms, such as the Hippocratic Oath in medicine. As a consequence, a reflection on the study of the risks associated with the ethical issues surrounding the design and manipulation of (...) this "massive data" seems to be essential. This book provides a direction and ethical value to these significant volumes of data. It proposes an ethical analysis model and recommendations to better keep this data in check. This empirical and ethico-technical approach brings together the first aspects of a moral framework directed toward thought, conscience and the responsibility of citizens concerned by the use of data of a personal nature. Defines Big Data applications in health Presents the ethical value of the medical datasphere via the description of a model of an ethical analysis of Big Data Provides the recommendations and steps necessary for successful management and governance of personal health data Helps readers determine what conditions are essential for the development of the study of Big Data. (shrink)

BackgroundHealth data-driven activities have become central in diverse fields (research, AI development, wearables, etc.), and new ethical challenges have arisen with regards to privacy, integrity, and appropriateness of use. To ensure the protection of individuals’ fundamental rights and freedoms in a changing environment, including their right to the protection of personal data, we aim to identify the ethical approaches adopted by scientists during intensive data exploitation when collecting, using, or sharing peoples’ health data.MethodsTwelve scientists who were (...) collecting, using, or sharing health data in different contexts in Sweden, were interviewed. We used systematic expert interviews to access these scientists’ specialist knowledge, and analysed the interviews with thematic analysis. Phrases, sentences, or paragraphs through which ethical values and norms were expressed, were identified and coded. Codes that reflected similar concepts were grouped, subcategories were formulated, and categories were connected to traditional ethical approaches.ResultsThrough several examples, the respondents expressed four different ethical approaches, which formed the main conceptual categories: consideration of consequences, respect for rights, procedural compliance, and being professional.ConclusionsTo a large extent, the scientists’ ethical approaches were consistent with ethical and legal principles. Data sharing was considered important and worth pursuing, even though it is difficult. An awareness of the complex issues involved in data sharing was reflected from different perspectives, and the respondents commonly perceived a general lack of practical procedures that would by default ensure ethical and legally compliant data collection and sharing. We suggest that it is an opportune time to move on from policy discussions to practical technological ethics-by-design solutions that integrate these principles into practice. (shrink)

BackgroundResearch using data from medical care promises to advance medical science and improve healthcare. Academia is not the only sector that expects such research to be of great benefit. The research-based health industry is also interested in so-called ‘real-world’ health data to develop new drugs, medical technologies or data-based health applications. While access to medical data is handled very differently in different countries, and some empirical data suggest people are uncomfortable with the idea of companies (...) accessing health information, this paper aims to advance the ethical debate about secondary use of medical data generated in the public healthcare sector by for-profit companies for medical research (ReuseForPro).MethodsWe first clarify some basic concepts and our ethical-normative approach, then discuss and ethically evaluate potential claims and interests of relevant stakeholders: patients as data subjects in the public healthcare system, for-profit companies, the public, and physicians and their healthcare institutions. Finally, we address the tensions between legitimate claims of different stakeholders in order to suggest conditions that might ensure ethically sound ReuseForPro.ResultsWe conclude that there are good reasons to grant for-profit companies access to medical data if they meet certain conditions: among others they need to respect patients’ informational rights and their actions need to be compatible with the public’s interest in health benefit from ReuseForPro. (shrink)

The COVID-19 pandemic and its related policies (e.g., stay at home and social distancing orders) have increased people’s use of digital technology, such as social media. Researchers have, in turn, utilized artificial intelligence to analyze social media data for public health surveillance. For example, through machine learning and natural language processing, they have monitored social media data to examine public knowledge and behavior. This paper explores the ethical considerations of using artificial intelligence to monitor social media to understand (...) the public’s perspectives and behaviors surrounding COVID-19, including potential risks and benefits of an AI-driven approach. Importantly, investigators and ethics committees have a role in ensuring that researchers adhere to ethical principles of respect for persons, beneficence, and justice in a way that moves science forward while ensuring public safety and confidence in the process. (shrink)