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Introduction: The rapid advancement of artificial intelligence (AI) has led to significant transformations in health and healthcare. As AI technologies continue to evolve, there is an urgent need to establish a unified framework that guides the design, implementation, and evaluation of AI-driven interventions across individual and population health contexts., Approach: In response to this need, the National Academy of Medicine (NAM) has initiated the development of an AI code of conduct (AICC) through its Digital Health Action Collaborative. This code of conduct is grounded in shared principles and commitments, aiming to actualize ethical and effective AI practices within the broader health and healthcare ecosystem. Given its specialized expertise and insight, the biomedical informatics (BMI) community plays a pivotal role in shaping and applying these guidelines., Recommendations: We, as members of the AICC Steering Committee and the NAM Digital Health Action Collaborative, urge BMI educators, researchers, and practitioners to engage actively in refining and implementing the AICC. This involvement is critical to ensuring that the code is robust, applicable, and continuously improved to meet the evolving challenges facing health and healthcare., (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

In the 21st century, medical ethics has been combined with informatics ethics to form medical informatics ethics, and medical education researchers need to be aware of medical informatics ethics principles. An important medical informatics ethics principle is guarding against excess: gathering only those data that are required, and using all the data that have been gathered. An example of excessive data gathering can be found in the gathering of demographic data: it is considered excessive when these data are gathered for no explicit reason, used minimally in the Results, and mostly ignored in the Discussion. This paper details the problem of excessive data gathering, and then outlines five steps requiring the cooperation of institutional ethics review boards, researchers, journal editors and journal reviewers that should be followed in order to guard against excess in medical education research.

Artificial intelligence (AI) is increasingly of tremendous interest in the medical field. How-ever, failures of medical AI could have serious consequences for both clinical outcomes and the patient experience. These consequences could erode public trust in AI, which could in turn undermine trust in our healthcare institutions. This article makes 2 contributions. First, it describes the major conceptual, technical, and humanistic challenges in medical AI. Second, it proposes a solution that hinges on the education and accreditation of new expert groups who specialize in the development, verification, and operation of medical AI technologies. These groups will be required to maintain trust in our healthcare institutions., (© The Author(s) 2020. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Objective: Human trafficking is a global problem taking many forms, including sex and labor exploitation. Trafficking victims can be any age, although most trafficking begins when victims are adolescents. Many trafficking victims have contact with health-care providers across various health-care contexts, both for emergency and routine care., Materials and Methods: We propose 4 specific areas where medical informatics can assist with combatting trafficking: screening, clinical decision support, community-facing tools, and analytics that are both descriptive and predictive. Efforts to implement health information technology interventions focused on trafficking must be carefully integrated into existing clinical work and connected to community resources to move beyond identification to provide assistance and to support trauma-informed care., Results: We lay forth a research and implementation agenda to integrate human trafficking identification and intervention into routine clinical practice, supported by health information technology., Conclusions: A sociotechnical systems approach is recommended to ensure interventions address the complex issues involved in assisting victims of human trafficking., (© The Author(s) 2020. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

The COVID-19 pandemic response in the United States has exposed significant gaps in information systems and processes that prevent timely clinical and public health decision-making. Specifically, the use of informatics to mitigate the spread of SARS-CoV-2, support COVID-19 care delivery, and accelerate knowledge discovery bring to the forefront issues of privacy, surveillance, limits of state powers, and interoperability between public health and clinical information systems. Using a consensus-building process, we critically analyze informatics-related ethical issues in light of the pandemic across 3 themes: (1) public health reporting and data sharing, (2) contact tracing and tracking, and (3) clinical scoring tools for critical care. We provide context and rationale for ethical considerations and recommendations that are actionable during the pandemic and conclude with recommendations calling for longer-term, broader change (beyond the pandemic) for public health organization and policy reform., (© The Author(s) 2020. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

The answer to the question whether COVID-19 is a hype or not depends on how we define a hype. The article loosely builds on philosophical discussions about hypes in knowledge work and information sciences. The central idea is to make clear that hypes always imply a certain overload of information and that the paradoxical outcome of this that it is not just information that is piling up but also disinformation. It is argued that it is in this sense (and only in this sense) that COVID-19 is a hype. How we respond to this hype depends very strongly on subjective sensitivities towards both information and desinformation.

Background: Information technologies have been vital during the COVID-19 pandemic. Telehealth and telemedicine services, especially, fulfilled their promise by allowing patients to receive advice and care at a distance, making it safer for all concerned. Over the preceding years, professional societies, governments, and scholars examined ethical, legal, and social issues (ELSI) related to telemedicine and telehealth. Primary concerns evident from reviewing this literature have been quality of care, access, consent, and privacy., Objectives: To identify and summarize ethical, legal, and social issues related to information technology in healthcare, as exemplified by telehealth and telemedicine. To expand on prior analyses and address gaps illuminated by the COVID-19 experience. To propose future research directions., Methods: Literature was identified through searches, forward and backward citation chaining, and the author's knowledge of scholars and works in the area. EU and professional organizations' guidelines, and nineteen scholarly papers were examined and categories created to identify ethical, legal, and social issues they addressed. A synthesis matrix was developed to categorize issues addressed by each source., Results: A synthesis matrix was developed and issues categorized as: quality of care, consent and autonomy, access to care and technology, legal and regulatory, clinician responsibilities, patient responsibilities, changed relationships, commercialization, policy, information needs, and evaluation, with subcategories that fleshed out each category. The literature primarily addressed quality of care, access, consent, and privacy. Other identified considerations were little discussed. These and newer concerns include: usability, tailoring services to each patient, curriculum and training, implementation, commercialization, and licensing and liability. The need for interoperability, data availability, cybersecurity, and informatics infrastructure also is more apparent. These issues are applicable to other information technologies in healthcare., Conclusions: Clinicians and organizations need updated guidelines for ethical use of telemedicine and telehealth care, and decision- and policy-makers need evidence to inform decisions. The variety of newly implemented telemedicine services is an on-going natural experiment presenting an unparalleled opportunity to develop an evidence-based way forward. The paper recommends evaluation using an applied ethics, context-sensitive approach that explores interactions among multiple factors and considerations. It suggests evaluation questions to investigate ethical, social, and legal issues through multi-method, sociotechnical, interpretive and ethnographic, and interactionist evaluation approaches. Such evaluation can help telehealth, and other information technologies, be integrated into healthcare ethically and effectively., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Objectives: To provide an overview of recent work at the intersection of Biomedical Informatics, Human-Computer Interaction, and Ethics., Methods: Search terms for Human-Computer Interaction, Biomedical Informatics, and Ethics were used to identify relevant papers published between 2017 and 2019.Relevant papers were identified through multiple methods, including database searches, manual reviews of citations, recent publications, and special collections, as well as through peer recommendations. Identified articles were reviewed and organized into broad themes., Results: We identified relevant papers at the intersection of Biomedical Informatics, Human-Computer Interactions, and Ethics in over a dozen journals. The content of these papers was organized into three broad themes: ethical issues associated with systems in use, systems design, and responsible conduct of research., Conclusions: The results of this overview demonstrate an active interest in exploring the ethical implications of Human-Computer Interaction concerns in Biomedical Informatics. Papers emphasizing ethical concerns associated with patient-facing tools, mobile devices, social media, privacy, inclusivity, and e-consent reflect the growing prominence of these topics in biomedical informatics research. New questions in these areas will likely continue to arise with the growth of precision medicine and citizen science., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)

Objective: To summarize significant research contributions on ethics in medical informatics published in 2019., Methods: An extensive search using PubMed/Medline was conducted to identify the scientific contributions published in 2019 that address ethics issues in medical informatics. The selection process comprised three steps: 1) 15 candidate best papers were first selected by the two section editors; 2) external reviewers from internationally renowned research teams reviewed each candidate best paper; and 3) the final selection of three best papers was conducted by the editorial committee of the Yearbook., Results: The three selected best papers explore timely issues of concern to the community and demonstrate how ethics considerations influence applied informatics., Conclusion: With regard to ethics in informatics, data sharing and privacy remain primary areas of concern. Ethics issues related to the development and implementation of artificial intelligence is an emerging topic of interest., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)

Objective: To highlight noteworthy papers that are representative of 2019 developments in the fields of sensors, signals, and imaging informatics., Method: A broad literature search was conducted in January 2020 using PubMed. Separate predefined queries were created for sensors/signals and imaging informatics using a combination of Medical Subject Heading (MeSH) terms and keywords. Section editors reviewed the titles and abstracts of both sets of results. Papers were assessed on a three-point Likert scale by two co-editors, rated from 3 (do not include) to 1 (should be included). Papers with an average score of 2 or less were then read by all three section editors, and the group nominated top papers based on consensus. These candidate best papers were then rated by at least six external reviewers., Results: The query related to signals and sensors returned a set of 255 papers from 140 unique journals. The imaging informatics query returned a set of 3,262 papers from 870 unique journals. Based on titles and abstracts, the section co-editors jointly filtered the list down to 50 papers from which 15 candidate best papers were nominated after discussion. A composite rating after review determined four papers which were then approved by consensus of the International Medical Informatics Association (IMIA) Yearbook editorial board. These best papers represent different international groups and journals., Conclusions: The four best papers represent state-of-the-art approaches for processing, combining, and analyzing heterogeneous sensor and imaging data. These papers demonstrate the use of advanced machine learning techniques to improve comparisons between images acquired at different time points, fuse information from multiple sensors, and translate images from one modality to another., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)

Objective: The more people there are who use clinical information systems (CIS) beyond their traditional intramural confines, the more promising the benefits are, and the more daunting the risks will be. This review thus explores the areas of ethical debates prompted by CIS conceptualized as smart systems reaching out to patients and citizens. Furthermore, it investigates the ethical competencies and education needed to use these systems appropriately., Methods: A literature review covering ethics topics in combination with clinical and health information systems, clinical decision support, health information exchange, and various mobile devices and media was performed searching the MEDLINE database for articles from 2016 to 2019 with a focus on 2018 and 2019. A second search combined these keywords with education., Results: By far, most of the discourses were dominated by privacy, confidentiality, and informed consent issues. Intertwined with confidentiality and clear boundaries, the provider-patient relationship has gained much attention. The opacity of algorithms and the lack of explicability of the results pose a further challenge. The necessity of sociotechnical ethics education was underpinned in many studies including advocating education for providers and patients alike. However, only a few publications expanded on ethical competencies. In the publications found, empirical research designs were employed to capture the stakeholders' attitudes, but not to evaluate specific implementations., Conclusion: Despite the broad discourses, ethical values have not yet found their firm place in empirically rigorous health technology evaluation studies. Similarly, sociotechnical ethics competencies obviously need detailed specifications. These two gaps set the stage for further research at the junction of clinical information systems and ethics., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)

Objectives: To provide an introduction to the 2020 International Medical Informatics Association (IMIA) Yearbook by the editors., Methods: This editorial provides an introduction and overview to the 2020 IMIA Yearbook which special topic is: "Ethics in Health Informatics". The keynote paper, the survey paper of the Special Topic section, and the paper about Donald Lindberg's ethical scientific openness in the History of Medical Informatics chapter of the Yearbook are discussed. Changes in the Yearbook Editorial Committee are also described., Results: Inspired by medical ethics, ethics in health informatics progresses with the advances in biomedical informatics. With the wide use of EHRs, the enlargement of the care team perimeter, the need for data sharing for care continuity, the reuse of data for the sake of research, and the implementation of AI-powered decision support tools, new ethics requirements are necessary to address issues such as threats on privacy, confidentiality breaches, poor security practices, lack of patient information, tension on data sharing and reuse policies, need for more transparency on apps effectiveness, biased algorithms with discriminatory outcomes, guarantee on trustworthy AI, concerns on the re-identification of de-identified data., Conclusions: Despite privacy rules rooted in the Health Insurance Portability and Accountability Act of 1996 (HIPAA) in the USA and even more restrictive new regulations such as the EU General Data Protection Regulation published in May 2018, some people do not believe their data will be kept confidential and may not share sensitive information with a provider, which may also induce unethical situations. Transparency on healthcare data processes is a condition of healthcare professionals' and patients' trust and their adoption of digital tools., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)

Contemporary bioethics was fledged and is sustained by challenges posed by new technologies. These technologies have affected many lives. Yet health informatics affects more lives than any of them. The challenges include the development and the appropriate uses and users of machine learning software, the balancing of privacy rights against the needs of public health and clinical practice in a time of Big Data analytics, whether and how to use this technology, and the role of ethics and standards in health policy. Historical antecedents in statistics and evidence-based practice foreshadow some of the difficulties now faced, but the scope and scale of these challenges requires that ethics, too, be brought to scale in parallel, especially given the size of contemporary data sets and the processing power of new computers. Fortunately, applied ethics affords a variety of tools to help identify and rank applicable values, support best practices, and contribute to standards. The bioethics community can in partnership with the informatics community arrive at policies that promote the health sciences while reaffirming the many and varied rights that patients expect will be honored., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)

Objective: To create practical recommendations for the curation of routinely collected health data and artificial intelligence (AI) in primary care with a focus on ensuring their ethical use., Methods: We defined data curation as the process of management of data throughout its lifecycle to ensure it can be used into the future. We used a literature review and Delphi exercises to capture insights from the Primary Care Informatics Working Group (PCIWG) of the International Medical Informatics Association (IMIA)., Results: We created six recommendations: (1) Ensure consent and formal process to govern access and sharing throughout the data life cycle; (2) Sustainable data creation/collection requires trust and permission; (3) Pay attention to Extract-Transform-Load (ETL) processes as they may have unrecognised risks; (4) Integrate data governance and data quality management to support clinical practice in integrated care systems; (5) Recognise the need for new processes to address the ethical issues arising from AI in primary care; (6) Apply an ethical framework mapped to the data life cycle, including an assessment of data quality to achieve effective data curation., Conclusions: The ethical use of data needs to be integrated within the curation process, hence running throughout the data lifecycle. Current information systems may not fully detect the risks associated with ETL and AI; they need careful scrutiny. With distributed integrated care systems where data are often used remote from documentation, harmonised data quality assessment, management, and governance is important. These recommendations should help maintain trust and connectedness in contemporary information systems and planned developments., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)

The increasing use of Information and Communication Technologies (ICT) in the health setting has given rise to the current phenomenon of eHealth or eMedicine, terms equivalent to the cyberspace concept, but refer exclusively to health. Due to the appearance of Web 2.0 it can be stated that we are dealing with a phenomenon much greater than just using the technologies: we are facing a real social change, giving rise to that called Health 2.0. The legal regulation of this cyberspace requires two different types of rules. Some that regulate cyberspace itself, and others, the actions performed with its use and to those that appear applicable to conventional law. In this latter case, we are referring to the applying of already existing laws to actions performed using ICT, as is the case of medical actions. Within these latter situations, two clearly different ones have to be distinguished: the professional responsibilities arising from medical actions carried out within health organisation settings when the use of ICT is introduced, and those other actions carried out voluntarily, individually and privately, using personal media and devices. It is in these types of actions where the legality, as regards data protection and privacy of the patient, appears to be violated, and at the same time the professional may be held responsible., (Copyright © 2020. Publicado por Elsevier España, S.L.U.)

To accelerate the adoption of a new method with a high potential to replace or extend an existing, presumably less accurate, medical scoring system, evaluation should begin days after the new concept is presented publicly, not years or even decades later. Metaphorically speaking, as chameleons capable of quickly changing colors to help their bodies adjust to changes in temperature or light, health-care decision makers should be capable of more quickly evaluating new data-driven insights and tools and should integrate the highest performing ones into national and international care systems. Doing so is essential, because it will truly save the lives of many individuals.

The implementation of digital health technologies into research studies for Alzheimer's disease and other clinical populations is on the rise. Digital tools and strategies create opportunities to further expand the framework for conducting research beyond the traditional medical research model. The combination of participatory and community-based research methods, electronic health records, and the creation of multi-dimensional, large-scale research platforms to support precision medicine, along with the Internet of Things era, have led to more engaged and informed research participants. Research participants increasingly possess an expectation they will play a critical role as partners in the design and conduct of research. Moreover, there is growing interest among research participants to have access to individual-level research data in real-time and/or at study completion. The traditional medical research model is largely one-directional where participants contribute data that is analyzed by researchers to yield generalizable knowledge. In this Ethics Review, we discuss a framework for a more nuanced intermediate research model, which is largely bidirectional and individually customized. Based on the seven ethical guidelines adopted by the National Institutes of Health, we speak to the ethical challenges of this intermediate type research. We also introduce a concept we are calling "MyTerms," in which prospective participants tailor the terms and conditions of informed consent to their personalized preferences for receiving information, including research results. Digital health technologies offer a convenient and flexible approach for researchers to develop protocols that make it possible for participants to obtain access to their study data in a personalized and meaningful way.

New advances in digital technologies and data-collection methods support expansion of the traditional research model in the current Digital Age. As researchers continue to explore ways to collect, manage, and share individual-level research study data, investigators must also acknowledge new ethical considerations that arise. To ensure protection of research participants, participants must remain a priority across the research continuum by researchers, institutional review boards, funding agencies, and consumers. Big data and data sharing also require additional investments and oversight to ensure proper management and, and even more important, protection of human subjects.

Objective: We describe current practices of ethics-related data governance in large neuro-ICT projects, identify gaps in current practice, and put forward recommendations on how to collaborate ethically in complex regulatory and normative contexts., Methods: We undertake a survey of published principles of data governance of large neuro-ICT projects. This grounds an approach to a normative analysis of current data governance approaches., Results: Several ethical issues are well covered in the data governance policies of neuro-ICT projects, notably data protection and attribution of work. Projects use a set of similar policies to ensure users behave appropriately. However, many ethical issues are not covered at all. Implementation and enforcement of policies remain vague., Conclusions: The data governance policies we investigated indicate that the neuro-ICT research community is currently close-knit and that shared assumptions are reflected in infrastructural aspects. This explains why many ethical issues are not explicitly included in data governance policies at present. With neuro-ICT research growing in scale, scope, and international involvement, these shared assumptions should be made explicit and reflected in data governance.

Objectives:  To provide a model for ensuring the ethical acceptability of the provisions that characterize the interjurisdictional use of eHealth, telemedicine, and associated modalities of health care deliveiy that are currently in place., Methods:  Following the approach initiated in their Global Protection of Health Data project within the Security in Health Information Systems (SiHIS) working group of the International Medical Informatics Association (IMIA), the authors analyze and evaluate relevant privacy and security approaches that are intended to stem the erosion of patients' trustworthiness in the handling of their sensitive information by health care and informatics professionals in the international context., Results:  The authors found that while the majority of guidelines and ethical codes essentially focus on the role and functioning of the institutions that use EHRs and information technologies, little if any attention has been paid to the qualifications of the health informatics professionals (HIPs) who actualize and operate information systems to deal with or address relevant ethical issues., Conclusion:  The apparent failure to address this matter indicates that the ethical qualification of HIPs remains an important security issue and that the Global Protection of Health Data project initiated by the SiHIS working group in 2015 should be expanded to develop into an internationally viable method of certification. An initial model to this effect is sketched and discussed., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)

This article was migrated. The article was marked as recommended. In the 21 st century, medical ethics has been combined with informatics ethics to form medical informatics ethics, and medical education researchers need to be aware of medical informatics ethics principles. An important medical informatics ethics principle is guarding against excess : gathering only those data that are required, and using all the data that have been gathered. An example of excessive data gathering can be found in the gathering of demographic data: it is considered excessive when these data are gathered for no explicit reason, used minimally in the Results, and mostly ignored in the Discussion. This paper details the problem of excessive data gathering, and then outlines five steps requiring the cooperation of institutional ethics review boards, researchers, journal editors and journal reviewers that should be followed in order to guard against excess in medical education research., (Copyright: © 2018 Masters K.)

There is great power and promise for mobile health (mHealth) technology in the realms of clinical practice and research. By offering the opportunity to reshape the interaction between clinician and patient or researcher and subject, the introduction of this technology allows clinicians and researchers access to larger quantities of more timely and reliable data. The potential developments are significant, and they are ethically relevant. With all technological developments, however, come new sets of ethical risks. In this paper, I assess the ethics of mHealth. I argue that while we have an ethical obligation to advance this work in order to further the quality and scope of care, the use of mHealth technology also presents challenges that must be addressed before and during the use of this technology. After describing the ethical landscape, I offer a pragmatic approach to meeting some of these challenges and minimizing ethical risk by switching from a privacy-centered frame to a consent-centered frame., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

The growth of self-tracking and personal surveillance has given rise to the Quantified Self movement. Members of this movement seek to enhance their personal well-being, productivity, and self-actualization through the tracking and gamification of personal data. The technologies that make this possible can also track and gamify aspects of our interpersonal, romantic relationships. Several authors have begun to challenge the ethical and normative implications of this development. In this article, we build upon this work to provide a detailed ethical analysis of the Quantified Relationship (QR). We identify eight core objections to the QR and subject them to critical scrutiny. We argue that although critics raise legitimate concerns, there are ways in which tracking technologies can be used to support and facilitate good relationships. We thus adopt a stance of cautious openness toward this technology and advocate the development of a research agenda for the positive use of QR technologies.

National and international public-private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges.

Health information technology, sometimes called biomedical informatics, is the use of computers and networks in the health professions. This technology has become widespread, from electronic health records to decision support tools to patient access through personal health records. These computational and information-based tools have engendered their own ethics literature and now present an opportunity to shape the standard medical and nursing ethics curricula. It is suggested that each of four core components in the professional education of clinicians-privacy, end-of-life care, access to healthcare and valid consent, and clinician-patient communication-offers an opportunity to leverage health information technology for curricular improvement. Using informatics in ethics education freshens ethics pedagogy and increases its utility, and does so without additional demands on overburdened curricula.

Background: Issues such as privacy, security, quality, etc. have received considerable attention in discussions of eHealth, mHealth and pHealth. However, comparatively little attention has been paid to the fact that these methods of delivering health care situate Health Information Professionals (HIPs) in an ethical context that is importantly different from that of traditional health care because they assign a fiduciary role to HIPs that they did not have before, their previous technical involvement notwithstanding. Even less attention has been paid to the fact that when these methods of health care delivery are interjurisdictional, they situate HIPs in an ethical fabric that does not exist in the intra-jurisdictional setting., Method: Privacy and other informatic patient rights in the context of traditional health care are identified and the role that HIPs play in this connection is analysed and distinguished from the role HIPs play in eHealth in order to determine whether the 2002 IMIA Code of Ethics provides sufficient guidance for HIPs in eHealth and associated settings. The position of inter-jurisdictional corporate eHealth providers is also touched upon., Results: It is found that in eHealth, mHealth and pHealth the ethical and legal position of HIPs differs importantly from that in traditional technologically-assisted health care because HIPs have fiduciary obligations they did not have before. It is also found that the 2002 IMIA Code of Ethics, which provides the framework for the codes of ethics that are promulgated by its various member organizations, provides insufficient guidance for dealing with issues that arise in this connection because they do not acknowledge this important change. It is also found that interjurisdictional eHealth etc. raises new ethical and legal issues for the corporate sector that transcend contractual arrangements., Conclusion: The 2002 IMIA Code of Ethics should be revised and updated to provide guidance for HIPs who are engaged in eHealth and related methods of health care delivery, and to provide a model for a corresponding up-to-date revision of the ethical guidelines that are promulgated by IMIA's member organizations. Similar steps should be taken in the corporate sector so that the ethical rules that govern the working environment of HIPs in the eHealth setting will not pose ethical and professional problems. A possible solution in terms of accreditation and certification is outlined., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

The promise of the field of Medical Informatics has been great and its impact has been significant. In 1999, the Yearbook editors of the International Medical Informatics Association (IMIA) - also the authors of the present paper - sought to assess this impact by selecting a number of seminal papers in the field, and asking experts to comment on these articles. In particular, it was requested whether and how the expectations, represented by these papers, had been fulfilled since their publication several decades earlier. Each expert was also invited to comment on what might be expected in the future. In the present paper, these areas are briefly reviewed again. Where did these early papers have an impact and where were they not as successful as originally expected? It should be noted that the extraordinary developments in computer technology observed in the last two decades could not have been foreseen by these early researchers. In closing, some of the possibilities and limitations of research in medical informatics are outlined in the context of a framework that considers six levels of computer applications in medicine and health care. For each level, some predictions are made for the future, concluded with thoughts on fruitful areas for ongoing research in the field.

Bioinformatics is essential in clinical oncology and research. Combining biology, computer science and mathematics, bioinformatics aims to derive useful information from clinical and biological data, often poorly structured, at a large scale. Bioinformatics approaches have reclassified certain cancers based on their molecular and biological presentation, improving treatment selection. Many molecular signatures have been developed and, after validation, some are now usable in clinical practice. Other applications could facilitate daily practice, reduce the risk of error and increase the precision of medical decision-making. Bioinformatics must evolve in accordance with ethical considerations and requires multidisciplinary collaboration. Its application depends on a sound technical foundation that meets strict quality requirements.

The rise of the Internet Age has brought a host of sweeping changes to the landscape of third-party reproduction. What began as a dyadic relationship between doctor and patient has evolved into a more complex system in which patients are able to access information online from a variety of external sources. Patients often seek to play a more active role in their third-party reproductive care, and the Internet allows them to do so. Further, demand for both medical and psychosocial information about donors and donor-conceived siblings, available online through patient forums and genetic registries, has altered the perception of gamete donation from a one-time event to an ongoing relationship. The advantages and disadvantages for patients and providers of this freer flow of information between third-party participants are examined. Search motivations of recipients and offspring, as well as types of information sought, are detailed. Recommendations are made regarding strategies fertility programs can use to optimally support their patients and navigate this new landscape., (Copyright © 2015 American Society for Reproductive Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: To survey advances in public health and epidemiology informatics over the past three years., Methods: We conducted a review of English-language research works conducted in the domain of public health informatics (PHI), and published in MEDLINE between January 2012 and December 2014, where information and communication technology (ICT) was a primary subject, or a main component of the study methodology. Selected articles were synthesized using a thematic analysis using the Essential Services of Public Health as a typology., Results: Based on themes that emerged, we organized the advances into a model where applications that support the Essential Services are, in turn, supported by a socio-technical infrastructure that relies on government policies and ethical principles. That infrastructure, in turn, depends upon education and training of the public health workforce, development that creates novel or adapts existing infrastructure, and research that evaluates the success of the infrastructure. Finally, the persistence and growth of infrastructure depends on financial sustainability., Conclusions: Public health informatics is a field that is growing in breadth, depth, and complexity. Several Essential Services have benefited from informatics, notably, "Monitor Health," "Diagnose & Investigate," and "Evaluate." Yet many Essential Services still have not yet benefited from advances such as maturing electronic health record systems, interoperability amongst health information systems, analytics for population health management, use of social media among consumers, and educational certification in clinical informatics. There is much work to be done to further advance the science of PHI as well as its impact on public health practice.

Introduction: The process of design and adoption of electronic health records may face a number of barriers. This study aimed to compare the importance of the main barriers from the experts' point of views in Iran., Methods: This survey study was completed in 2011. The potential participants (62 experts) included faculty members who worked in departments of health information technology and individuals who worked in the Ministry of Health in Iran and were in charge of the development and adoption of electronic health records. No sampling method was used in this study. Data were collected using a Likert-scale questionnaire ranging from 1 to 5. The validity of the questionnaire was established using content and face validity methods, and the reliability was calculated using Cronbach's alpha coefficient., Results: The response rate was 51.6 percent. The participants' perspectives showed that the most important barriers in the process of design and adoption of electronic health records were technical barriers (mean = 3.84). Financial and ethical-legal barriers, with the mean value of 3.80 were other important barriers, and individual and organizational barriers, with the mean values of 3.59 and 3.50 were found to be less important than other barriers from the experts' perspectives., Conclusion: Strategic planning for the creation and adoption of electronic health records in the country, creating a team of experts to assess the potential barriers and develop strategies to eliminate them, and allocating financial resources can help to overcome most important barriers to the adoption of electronic health records.

Objective: The completion of sequencing the human genome in 2003 has spurred the production and collection of genetic data at ever increasing rates. Genetic data obtained for clinical purposes, as is true for all results of clinical tests, are expected to be included in patients' medical records. With this explosion of information, questions of what, when, where and how to incorporate genetic data into electronic health records (EHRs) have reached a critical point. In order to answer these questions fully, this paper addresses the ethical, logistical and technological issues involved in incorporating these data into EHRs., Materials and Methods: This paper reviews journal articles, government documents and websites relevant to the ethics, genetics and informatics domains as they pertain to EHRs., Results and Discussion: The authors explore concerns and tasks facing health information technology (HIT) developers at the intersection of ethics, genetics, and technology as applied to EHR development., Conclusions: By ensuring the efficient and effective incorporation of genetic data into EHRs, HIT developers will play a key role in facilitating the delivery of personalized medicine.

Patients are increasingly involved in health informatics research. Researchers are always aware of the ethical dimensions of their research, but studies in the field with patients--especially among the frail, elderly, cognitively impaired--present specific additional 'everyday moral dilemmas'. Reflecting on experiences of a hospital study of patients with dementia, this paper draws attention on the type and constant presence of this situated ethics, the immediacy of decision-making, and the importance of everyday ethics for health informatics.

Over a decade ago, the fMRI Data Center (fMRIDC) pioneered open-access data sharing in the task-based functional neuroimaging community. Well ahead of its time, the fMRIDC effort encountered logistical, sociocultural and funding barriers that impeded the field-wise instantiation of open-access data sharing. In 2009, ambitions for open-access data sharing were revived in the resting state functional MRI community in the form of two grassroots initiatives: the 1000 Functional Connectomes Project (FCP) and its successor, the International Neuroimaging Datasharing Initiative (INDI). Beyond providing open access to thousands of clinical and non-clinical imaging datasets, the FCP and INDI have demonstrated the feasibility of large-scale data aggregation for hypothesis generation and testing. Yet, the success of the FCP and INDI should not be confused with widespread embracement of open-access data sharing. Reminiscent of the challenges faced by fMRIDC, key controversies persist and include participant privacy, the role of informatics, and the logistical and cultural challenges of establishing an open science ethos. We discuss the FCP and INDI in the context of these challenges, highlighting the promise of current initiatives and suggesting solutions for possible pitfalls., (Copyright © 2012 Elsevier Inc. All rights reserved.)

Information Technology (IT) and computing capabilities are revolutionizing the practice of medicine in an unprecedented way. Some current legal and ethical concerns evolving from this revolution are addressed, pointing to the emerging concepts in Israeli jurisprudence, which regards medical IT as an important contribution to patient empowerment, to medical risk management and in managing the resources of a national health system.

This article analyzes problems and implications for man and nature connected with the formation of a new architecture of science, based on the convergence of nanotechnology, biotechnology, information technology, and cognitive science (NBIC). It also describes evolution and genesis of bioethics, a scientific discipline and social practice with a special role of ethical management of potential risks of scientific research. The aim was to demonstrate the necessity of bioethical social control in the development of a global bioeconomy driven by NBIC technologies.

The contribution briefly introduces the PHM Ethics project and the PHM methodology. Within the PHM-Ethics project, a set of tools and modules had been developed that may assist in the evaluation and assessment of new technologies for personal health monitoring, referred to as "PHM methodology" or "PHM toolbox". An overview on this interdisciplinary methodology and its comprising modules is provided, areas of application and intended target groups are indicated.

The historical roots of IT-based monitoring in health care are described. Since the 1970ies monitoring has been spreading to more and more domains of health care and public health. Today one can observe monitoring of persons in many environments and regarding widely different questions. While these monitoring applications have been introduced ethical questions have been raised to balance the possible positive and negative outcomes of the approaches. Today IT-technology is entering many parts of our life - IT eventually became what had been coined already in the last century by IBM as "electronic dust" which one can find in every part of our environment. As most of these "dust-particles" are able to observe something one can also understand this development as a development into ubiquitous monitoring of nearly everything at any time. The foreseen ambient intelligence worlds are also spaces of ambient monitoring. This article describes this historical development. It emphasizes why ethical and data protection questions are an absolute must in most IT activities today.

Novel care-technologies possess a transformational potential. Future care and support may be provided via monitoring technologies such as smart devices, sensors, actors (robots) and Information and Communication Technologies. Such technologies enable care provision outside traditional care institutions, for instance in the homes of patients. Health monitoring may become "personalized" i.e. tailored to the needs of individual care recipients' but may also alter relations between care providers and care recipents, shape and form the care environment and influence values central to health-care. Starting out from a social constructivist theory of technology, an interactive ethical assessment-model is offered. The suggested model supplements a traditional analysis based on normative ethical theory (top-down approach) with interviews including relevant stakeholders (a bottom-up approach). This method has been piloted by small-scale interviews encircling stakeholder perspectives on three emerging technologies: (1) Careousel, a smart medicine-management device, (2) Robot Giraff, an interactive and mobile communication-device and (3) I-Care, a care-software that combines alarm and register system. By incorporating stakeholder perspectives into the analysis, the interactive ethical assessment model provides a richer understanding of the impact of PHM-technologies on ethical values than a traditional top-down model. If the assessment is conducted before the technology has reached the market - preferably in close interaction with developers and users - ethically sound technologies may be obtained.

Health information technology (HIT) is ever-increasing in complexity and has incrementally become a fundamental part of our everyday clinical lives. As HIT becomes more complex and commonplace, so do the questions it raises about stewardship and usage of data, along with the ethics of these applications. With the development of rapid-learning systems, such as ASCO's CancerLinQ, careful thought about the ethics and applications of these technologies is necessary. This article uses the principles-based framework of modern bioethics to examine evolving ethical issues that arise in the context of HIT and also discusses HIT's application in reducing cancer care disparities in the developing world. We recognize that this topic is quite broad, so here we provide an overview of the issues, rather than any definitive conclusions about a particular "correct path." Our hope is to stimulate discussion about this important topic, which will increasingly need to be addressed in the oncology community.