1,749 results on '"Confidentiality ethics"'
Search Results
2. [Translated article] Bioethical Conflicts in Current Dermatology: A Narrative Review.
- Author
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Lasheras-Pérez MA, Taberner R, and Martínez-Jarreta B
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- Humans, Conflict of Interest, Social Media ethics, Confidentiality ethics, Artificial Intelligence ethics, Telemedicine ethics, Codes of Ethics, Cosmetics, Dermatology ethics, Bioethical Issues
- Abstract
Both the functions and equipment of dermatologists have increased over the past few years, some examples being cosmetic dermatology, artificial intelligence, tele-dermatology, and social media, which added to the pharmaceutical industry and cosmetic selling has become a source of bioethical conflicts. The objective of this narrative review is to identify the bioethical conflicts of everyday dermatology practice and highlight the proposed solutions. Therefore, we conducted searches across PubMed, Web of Science and Scopus databases. Also, the main Spanish and American deontological codes of physicians and dermatologists have been revised. The authors recommend declaring all conflicts of interest while respecting the patients' autonomy, confidentiality, and privacy. Cosmetic dermatology, cosmetic selling, artificial intelligence, tele-dermatology, and social media are feasible as long as the same standards of conventional dermatology are applied. Nonetheless, the deontological codes associated with these innovations need to be refurbished., (Copyright © 2024 AEDV. Publicado por Elsevier España, S.L.U. All rights reserved.)
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- 2024
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3. What Do We Mean by Sharing of Patient Data? DaSH: A Data Sharing Hierarchy of Privacy and Ethical Challenges.
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Schreiber R, Koppel R, and Kaplan B
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- Humans, Confidentiality ethics, Information Dissemination ethics, Privacy
- Abstract
Background: Clinical data sharing is common and necessary for patient care, research, public health, and innovation. However, the term "data sharing" is often ambiguous in its many facets and complexities-each of which involves ethical, legal, and social issues. To our knowledge, there is no extant hierarchy of data sharing that assesses these issues., Objective: This study aimed to develop a hierarchy explicating the risks and ethical complexities of data sharing with a particular focus on patient data privacy., Methods: We surveyed the available peer-reviewed and gray literature and with our combined extensive experience in bioethics and medical informatics, created this hierarchy., Results: We present six ways on how data are shared and provide a tiered Data Sharing Hierarchy (DaSH) of risks, showing increasing threats to patients' privacy, clinicians, and organizations as one progresses up the hierarchy from data sharing for direct patient care, public health and safety, scientific research, commercial purposes, complex combinations of the preceding efforts, and among networked third parties. We offer recommendations to enhance the benefits of data sharing while mitigating risks and protecting patients' interests by improving consenting; developing better policies and procedures; clarifying, simplifying, and updating regulations to include all health-related data regardless of source; expanding the scope of bioethics for information technology; and increasing ongoing monitoring and research., Conclusion: Data sharing, while essential for patient care, is increasingly complex, opaque, and perhaps perilous for patients, clinicians, and health care institutions. Risks increase with advances in technology and with more encompassing patient data from wearables and artificial intelligence database mining. Data sharing places responsibilities on all parties: patients, clinicians, researchers, educators, risk managers, attorneys, informaticists, bioethicists, institutions, and policymakers., Competing Interests: None declared., (Thieme. All rights reserved.)
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- 2024
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4. Ethical Challenges and Opportunities in Applying Artificial Intelligence to Cardiovascular Medicine.
- Author
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Lewin S, Chetty R, Ihdayhid AR, and Dwivedi G
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- Humans, Cardiovascular Diseases therapy, Computer Security ethics, Confidentiality ethics, Artificial Intelligence ethics, Cardiology ethics
- Abstract
Much anticipation surrounds artificial intelligence's (AI) emergence as a promising tool in health care. It offers potential to revolutionise clinical practice through assistive and autonomous operation. The high prevalence of cardiac disease globally provides an opportunity for AI technology to increase health care efficiency and improve patient outcomes. This article explores the ethical considerations necessary for safe and acceptable implantation of AI within the health care space. We aim to highlight several challenges such as data privacy, consent, sustainability, and cybersecurity. In addition, we outline the future opportunities for AI use in cardiovascular medicine. Overall, we argue that AI deployment demands robust regulation, transparent algorithms, and safeguarding of patient privacy., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)
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- 2024
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5. Bioethical Conflicts in Current Dermatology: A Narrative Review.
- Author
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Lasheras-Pérez MA, Taberner R, and Martínez-Jarreta B
- Subjects
- Humans, Conflict of Interest, Social Media ethics, Artificial Intelligence ethics, Confidentiality ethics, Telemedicine ethics, Codes of Ethics, Drug Industry ethics, Cosmetics, Dermatology ethics, Bioethical Issues
- Abstract
Both the functions and equipment of dermatologists have increased over the past few years, some examples being cosmetic dermatology, artificial intelligence, tele-dermatology, and social media, which added to the pharmaceutical industry and cosmetic selling has become a source of bioethical conflicts. The objective of this narrative review is to identify the bioethical conflicts of everyday dermatology practice and highlight the proposed solutions. Therefore, we conducted searches across PubMed, Web of Science and Scopus databases. Also, the main Spanish and American deontological codes of physicians and dermatologists have been revised. The authors recommend declaring all conflicts of interest while respecting the patients' autonomy, confidentiality, and privacy. Cosmetic dermatology, cosmetic selling, artificial intelligence, tele-dermatology, and social media are feasible as long as the same standards of conventional dermatology are applied. Nonetheless, the deontological codes associated with these innovations need to be refurbished., (Copyright © 2024 AEDV. Publicado por Elsevier España, S.L.U. All rights reserved.)
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- 2024
- Full Text
- View/download PDF
6. Beyond neural data: Cognitive biometrics and mental privacy.
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Magee P, Ienca M, and Farahany N
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- Humans, Wearable Electronic Devices, Biometry methods, Confidentiality ethics, Privacy, Cognition physiology, Brain-Computer Interfaces ethics
- Abstract
Innovations in wearable technology and artificial intelligence have enabled consumer devices to process and transmit data about human mental states (cognitive, affective, and conative) through what this paper refers to as "cognitive biometrics." Devices such as brain-computer interfaces, extended reality headsets, and fitness wearables offer significant benefits in health, wellness, and entertainment through the collection and processing and cognitive biometric data. However, they also pose unique risks to mental privacy due to their ability to infer sensitive information about individuals. This paper challenges the current approach to protecting individuals through legal protections for "neural data" and advocates for a more expansive legal and industry framework, as recently reflected in the draft UNESCO Recommendation on the Ethics of Neurotechnology, to holistically address both neural and cognitive biometric data. Incorporating this broader and more inclusive approach into legislation and product design can facilitate responsible innovation while safeguarding individuals' mental privacy., Competing Interests: Declaration of interests P.M. received travel reimbursement and hospitality in connection with a one-day ethics workshop conducted by Meta. N.F. and M.I. serve on the UNESCO AHEG Committee. The UNESCO draft referred to in this paper was written collectively by the AHEG Committee, to which both N.F. and M.I. contributed as members of the committee. N.F. serves as an advisor to OpenBCI and is the co-chair of the Neuroethics Working Group of the NIH., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)
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- 2024
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7. Examining legal and ethical challenges in HIV/AIDS disclosure obligations and medical practices: a case study from China.
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Xie Z and Duan Z
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- Humans, China, Acquired Immunodeficiency Syndrome, Privacy legislation & jurisprudence, Confidentiality legislation & jurisprudence, Confidentiality ethics, Male, Trust, HIV Infections, Physician-Patient Relations ethics, Disclosure legislation & jurisprudence, Disclosure ethics
- Abstract
In accordance with China's regulations on the prevention and control of HIV/AIDS, individuals diagnosed with HIV are required to disclose their medical condition when soliciting medical care in Mainland China. Empirical field investigations, however, indicate that people living with HIV (PLHIV) predominantly comply with this mandate only under conditions of absolute necessity. The ensuing conundrum, juxtaposing the imperative of privacy against the duty of disclosure, has materialised into a recurrent vicious cycle in its practical application, intensifying the intrinsic trust disparities characterising doctor-patient interactions. A meticulous scrutiny of pertinent legal precedents, coupled with in-depth field studies, reveals that the genesis of these complications can be traced back to an unforeseen metamorphosis in the legislative intent underpinning HIV/AIDS prevention and therapeutic strategies. While the initial objective was risk mitigation, the effect of enactment in real-world scenarios has significantly decreased. Owing to factors including extensive media reporting as well as prevailing public discourse, PLHIV, rather than being perceived as rights-bearing entities in legal frameworks, are increasingly relegated to the restrictive and dehumanising labels of 'HIV/AIDS'. As these individuals navigate their rights through alternative non-regulatory channels, circumventing formal legal obligations, their efficacy in actualising these rights is concurrently undermined., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2024
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8. Study of Patients' Privacy during the COVID-19 Pandemic in Iranian Health Care Settings.
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Mobasher M, Samzadeh Kermani H, Eslami Shahrbabaki M, and Sarafinejad A
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- Humans, Iran, Cross-Sectional Studies, Male, Female, Adult, Middle Aged, Surveys and Questionnaires, Health Personnel psychology, Health Personnel statistics & numerical data, Aged, Pandemics, Young Adult, COVID-19 epidemiology, Privacy, Confidentiality ethics, Confidentiality standards
- Abstract
Background: Patient's privacy protection is a challenging ethical issue. The complex situation of the COVID-19 pandemic was a probable predictor of breaching confidentiality. This study aimed to assess the viewpoints of COVID-19-confirmed patients, who were hospitalized, and their healthcare providers about the compliance of different aspects of patient's privacy., Methods: This cross-sectional study included 3433 COVID-19-confirmed patients who were hospitalized in Kerman, between 2020 and 2021, and about 1228 related physicians, nurses, and paraclinical staff. Two separate validated researcher-made questionnaires were developed, each including subscales for physical, informational, and spatial privacy, as well as a satisfaction rate of privacy protection. The data were analyzed using SPSS software version 26, with independent samples t test, Mann-Whitney-U, Kruskal Wallis, and Multiple Linear Regression tests at a 95% confidence interval., Results: The mean percentages of the patients' privacy scores in physical, spatial, and informational areas were significantly lower (P<0.001) than the average of the medical staff's scores in all three areas (Difference: 10.27%, 14.83%, and 4.91%, respectively). Physical and spatial privacy scores could be predicted based on the participants' classification, patients or medical staff, and sex. The mean patients' satisfaction score was 9.25% lower than the medical staff's (P<0.001). Moreover, only academic hospitals showed a statistically significant difference between the patient's satisfaction with privacy protection and medical staff's viewpoints (P<0.001)., Conclusion: Although this study indicated the benefits of protecting patients' privacy in the healthcare setting, patients' privacy scores and satisfaction were lower than their healthcare providers. The pandemic conditions might have been an obstacle to preserving patients' rights. These findings demonstrated the importance of sensitizing healthcare providers to manage these ethical challenges in a complicated critical state such as the COVID-19 pandemic., Competing Interests: None declared., (Copyright: © Iranian Journal of Medical Sciences.)
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- 2024
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9. Ethical assessment of virtual consultation services: scoping review and development of a practical ethical checklist.
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Reid M and Moerenhout T
- Subjects
- Humans, Checklist, Confidentiality ethics, Continuity of Patient Care organization & administration, COVID-19 prevention & control, Informed Consent ethics, New Zealand, Pandemics prevention & control, Remote Consultation ethics, Remote Consultation organization & administration
- Abstract
Introduction The use of telephone and video consultations has vastly increased since the onset of the COVID-19 pandemic. Health care providers in traditional clinical practices have embraced these virtual consultations as an alternative to face-to-face consultations, but there has also been a simultaneous increase in services offered directly to consumers via commercial entities. One of the main challenges in telemedicine (and the broader field of digital health) is how to conduct a meaningful ethical assessment of such services. Aim This article presents a novel framework for practical ethical analysis of direct-to-consumer virtual general practitioner consultation services in Aotearoa New Zealand. Methods First, a scoping review of academic and policy documents identified the core ethical challenges arising from virtual consultations. Second, a qualitative analysis was conducted to translate the main ethical themes and subthemes into practical questions to assess virtual general practice services. Results A total of 49 relevant documents were selected for review. The six key ethical themes related to telemedicine were: privacy, security, and confidentiality; equity; autonomy and informed consent; quality and standards of care; patient empowerment; and continuity of care. A practical ethical checklist consisting of 25 questions was developed from these themes and their subthemes. Discussion The checklist provides an accessible way of incorporating ethics into technology assessment and can be used by all relevant stakeholders, including patients, health care providers, and developers. Application of the framework contributes to improving the quality of virtual consultation services with a specific focus on ethics.
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- 2024
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10. Ethical assessment of virtual consultation services: application of a practical ethical checklist to direct-to-consumer services in Aotearoa New Zealand.
- Author
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Reid M and Moerenhout T
- Subjects
- New Zealand, Humans, Informed Consent ethics, Primary Health Care ethics, Primary Health Care organization & administration, Primary Health Care standards, Continuity of Patient Care organization & administration, Remote Consultation ethics, Quality of Health Care standards, Quality of Health Care organization & administration, Personal Autonomy, Privacy, Checklist, Confidentiality standards, Confidentiality ethics, Telemedicine ethics, Telemedicine organization & administration, Telemedicine standards
- Abstract
Introduction Evaluating digital health services from an ethical perspective remains one of the more difficult challenges in telemedicine and health technology assessment. We have previously developed a practical ethical checklist comprising 25 questions covering six ethical themes: privacy, security, and confidentiality; equity; autonomy and informed consent; quality and standards of care; patient empowerment; and continuity of care. The checklist makes ethical analysis more easily accessible to a broader audience, including health care providers, technology developers, and patients. Aim This project applies the previously developed practical ethical checklist to direct-to-consumer virtual primary care consultation services in Aotearoa New Zealand to conduct an ethical assessment. Method We first mapped the available services. The ethical framework was then applied to assess these services based on publicly available information. Results Our findings show that the examined virtual consultation services adequately address ethical considerations, particularly regarding patient data privacy and informed consent. We identified areas for improvement in equity, patient empowerment, and continuity of care. Discussion The application of this framework raises fundamental questions on how continuity of care, equity, and comprehensive care can be protected when virtual care becomes more ubiquitous. The checklist can help virtual consultation services identify areas of improvement and ensure they meet ethical criteria, thus contributing to quality of care. The framework may be adapted to other digital health services and tools, providing ethical guidance to technology developers, clinicians, and patients and their whānau (family).
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- 2024
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11. Ethics of Wearable-Based Out-of-Hospital Cardiac Arrest Detection.
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Eversdijk M, Habibović M, Willems DL, Kop WJ, Ploem MC, Dekker LRC, Tan HL, Vullings R, and Bak MAR
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- Humans, Informed Consent ethics, Confidentiality ethics, Predictive Value of Tests, Beneficence, Reproducibility of Results, Equipment Design, Out-of-Hospital Cardiac Arrest therapy, Out-of-Hospital Cardiac Arrest diagnosis, Wearable Electronic Devices ethics
- Abstract
Out-of-hospital cardiac arrest is a major health problem, and immediate treatment is essential for improving the chances of survival. The development of technological solutions to detect out-of-hospital cardiac arrest and alert emergency responders is gaining momentum; multiple research consortia are currently developing wearable technology for this purpose. For the responsible design and implementation of this technology, it is necessary to attend to the ethical implications. This review identifies relevant ethical aspects of wearable-based out-of-hospital cardiac arrest detection according to four key principles of medical ethics. First, aspects related to beneficence concern the effectiveness of the technology. Second, nonmaleficence requires preventing psychological distress associated with wearing the device and raises questions about the desirability of screening. Third, grounded in autonomy are empowerment, the potential reidentification from continuously collected data, issues of data access, bystander privacy, and informed consent. Finally, justice concerns include the risks of algorithmic bias and unequal technology access. Based on this overview and relevant legislation, we formulate design recommendations. We suggest that key elements are device accuracy and reliability, dynamic consent, purpose limitation, and personalization. Further empirical research is needed into the perspectives of stakeholders, including people at risk of out-of-hospital cardiac arrest and their next-of-kin, to achieve a successful and ethically balanced integration of this technology in society., Competing Interests: None.
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- 2024
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12. With advancement in health technology comes great responsibility - Ethical and safety considerations for using digital health technology: A narrative review.
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Grosman-Rimon L and Wegier P
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- Humans, Computer Security ethics, Confidentiality ethics, Patient Safety, Telemedicine ethics, Digital Health ethics, Digital Technology ethics
- Abstract
The accelerated adoption of digital health technologies in the last decades has raised important ethical and safety concerns. Despite the potency and usefulness of digital health technologies, addressing safety, and ethical considerations needs to take greater prominence. This review paper focuses on ethical and safety facets, including health technology-related risks, users' safety and well-being risks, security and privacy concerns, and risks to transparency and diminished accountability associated with the utilization of digital health technologies. In order to maximize the potential of health technology benefits, awareness of safety risks, and ethical concerns should be increased, and the use of appropriate strategies and measures should be considered., Competing Interests: The authors have no funding and conflicts of interest to disclose., (Copyright © 2024 the Author(s). Published by Wolters Kluwer Health, Inc.)
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- 2024
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13. Ethical Implications of Artificial Intelligence in Gastroenterology: The Co-pilot or the Captain?
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Aggarwal N, Drew DA, Parikh RB, and Guha S
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- Humans, Informed Consent ethics, Confidentiality ethics, Artificial Intelligence ethics, Gastroenterology ethics
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Though artificial intelligence (AI) is being widely implemented in gastroenterology (GI) and hepatology and has the potential to be paradigm shifting for clinical practice, its pitfalls must be considered along with its advantages. Currently, although the use of AI is limited in practice to supporting clinical judgment, medicine is rapidly heading toward a global environment where AI will be increasingly autonomous. Broader implementation of AI will require careful ethical considerations, specifically related to bias, privacy, and consent. Widespread use of AI raises concerns related to increasing rates of systematic errors, potentially due to bias introduced in training datasets. We propose that a central repository for collection and analysis for training and validation datasets is essential to overcoming potential biases. Since AI does not have built-in concepts of bias and equality, humans involved in AI development and implementation must ensure its ethical use and development. Moreover, ethical concerns regarding data ownership and health information privacy are likely to emerge, obviating traditional methods of obtaining patient consent that cover all possible uses of patient data. The question of liability in case of adverse events related to use of AI in GI must be addressed among the physician, the healthcare institution, and the AI developer. Though the future of AI in GI is very promising, herein we review the ethical considerations in need of additional guidance informed by community experience and collective expertise., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
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- 2024
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14. Privacy-Enhancing Technologies in Biomedical Data Science.
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Cho H, Froelicher D, Dokmai N, Nandi A, Sadhuka S, Hong MM, and Berger B
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- Humans, Data Science methods, Biomedical Research, Computer Security, Confidentiality ethics, Information Dissemination methods, Privacy
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The rapidly growing scale and variety of biomedical data repositories raise important privacy concerns. Conventional frameworks for collecting and sharing human subject data offer limited privacy protection, often necessitating the creation of data silos. Privacy-enhancing technologies (PETs) promise to safeguard these data and broaden their usage by providing means to share and analyze sensitive data while protecting privacy. Here, we review prominent PETs and illustrate their role in advancing biomedicine. We describe key use cases of PETs and their latest technical advances and highlight recent applications of PETs in a range of biomedical domains. We conclude by discussing outstanding challenges and social considerations that need to be addressed to facilitate a broader adoption of PETs in biomedical data science.
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- 2024
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15. Biomedical Data Science, Artificial Intelligence, and Ethics: Navigating Challenges in the Face of Explosive Growth.
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Federico CA and Trotsyuk AA
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- Humans, Computer Security ethics, Computer Security legislation & jurisprudence, Biomedical Research ethics, Confidentiality ethics, Privacy, Artificial Intelligence ethics, Data Science ethics, Data Science methods
- Abstract
Advances in biomedical data science and artificial intelligence (AI) are profoundly changing the landscape of healthcare. This article reviews the ethical issues that arise with the development of AI technologies, including threats to privacy, data security, consent, and justice, as they relate to donors of tissue and data. It also considers broader societal obligations, including the importance of assessing the unintended consequences of AI research in biomedicine. In addition, this article highlights the challenge of rapid AI development against the backdrop of disparate regulatory frameworks, calling for a global approach to address concerns around data misuse, unintended surveillance, and the equitable distribution of AI's benefits and burdens. Finally, a number of potential solutions to these ethical quandaries are offered. Namely, the merits of advocating for a collaborative, informed, and flexible regulatory approach that balances innovation with individual rights and public welfare, fostering a trustworthy AI-driven healthcare ecosystem, are discussed.
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- 2024
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16. Digital health technologies: Compounding the existing ethical challenges of the 'right' not to know.
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Armitage RC
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- Humans, Confidentiality ethics, Personal Autonomy, Patient Rights ethics, Digital Health, Digital Technology ethics
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Introduction: Doctors hold a prima facie duty to respect the autonomy of their patients. This manifests as the patient's 'right' not to know when patients wish to remain unaware of medical information regarding their health, and poses ethical challenges for good medical practice. This paper explores how the emergence of digital health technologies might impact upon the patient's 'right' not to know., Method: The capabilities of digital health technologies are surveyed and ethical implications of their effects on the 'right' not to know are explored., Findings: Digital health technologies are increasingly collecting, processing and presenting medical data as clinically useful information, which simultaneously presents large opportunities for improved health outcomes while compounding the existing ethical challenges generated by the patient's 'right' not to know., Conclusion: These digital tools should be designed to include functionality that mitigates these ethical challenges, and allows the preservation of their user's autonomy with regard to the medical information they wish to learn and not learn about., (© 2024 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)
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- 2024
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17. Ethical implications of the widespread use of informal mHealth methods in Ghana.
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Owusu SA
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- Humans, Ghana, Informed Consent ethics, Delivery of Health Care ethics, Privacy, Telemedicine ethics, Confidentiality ethics
- Abstract
Background: Informal mHealth is widely used by community health nurses in Ghana to extend healthcare delivery services to clients who otherwise might have been excluded from formal health systems or would experience significant barriers in their quest to access formal health services. The nurses use their private mobile phones or devices to make calls to their clients, health volunteers, colleagues or superiors. These phone calls are also reciprocal in nature. Besides, the parties exchange or share other health data and information through text messages, pictures, videos or voice clips. There are some ethical dimensions that are inherent in these practices that ought to be critically scrutinised by bioethicists., Objective: The author has argued in this paper that informal mHealth at large scale adoption in Ghana is associated with some bioethical challenges., Methods: This essay was largely based on an analysis of an empirical study published by Hampshire et al in 2021 on the use of informal mHealth methods in Ghana., Results: Widespread adoption of Informal mHealth in Ghana is associated with privacy invasion of both the nurses and their clients, breaches confidentiality of the parties, discredits the validity of informed consent processes and may predispose the nurses to some other significant aggregated harms., Conclusion: The author affirms his partial support for a formalised adoption process of informal mHealth in Ghana but has reiterated that the current ethical challenges associated with informal mHealth in Ghana cannot escape all the debilitating bioethical challenges, even if it is formalised., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2024
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18. Ethical considerations during Mpox Outbreak: a scoping review.
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El Dine FB, Gebreal A, Samhouri D, Estifanos H, Kourampi I, Abdelrhem H, Mostafa HA, Elshaar AG, Suvvari TK, and Ghazy RM
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- Humans, Confidentiality ethics, Privacy, Morals, Social Stigma, Disease Outbreaks ethics, Mpox (monkeypox) epidemiology
- Abstract
Background: Historically, epidemics have been accompanied by the concurrent emergence of stigma, prejudice, and xenophobia. This scoping review aimed to describe and map published research targeting ethical values concerning monkeypox (mpox). In addition, it aimed to understand the research gaps related to mpox associated stigma., Methods: We comprehensively searched databases (PubMed Central, PubMed Medline, Scopus, Web of Science, Ovid, and Google Scholar) to identify published literature concerning mpox ethical issues and stigma from May 6, 2022, to February 15, 2023. The key search terms used were "monkeypox", "ethics", "morals", "social stigma", "privacy", "confidentiality", "secrecy", "privilege", "egoism", and "metaethics". This scoping review followed the framework proposed by Arksey and O'Malley in 2005 and was further improved by the recommendations of Levac et al. in 2010., Results: The search strategies employed in the scoping review yielded a total of 454 articles. We analyzed the sources, types, and topics of the retrieved articles/studies. The authors were able to identify 32 studies that met inclusion criteria. Six of the 32 included studies were primary research. The study revealed that the ongoing mpox outbreak is contending with a notable surge in misinformation and societal stigma. It highlights the adverse impacts of stigma and ethical concerns associated with mpox, which can negatively affect people with the disease., Conclusion: The study's findings underscore the imperative need to enhance public awareness; involve civil society; and promote collaboration among policymakers, medical communities, and social media platforms. These collective endeavors are crucial for mitigating stigma, averting human-to-human transmission, tackling racism, and dispelling misconceptions associated with the outbreak., (© 2024. The Author(s).)
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- 2024
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19. Multi-Level Ethical Considerations of Artificial Intelligence Health Monitoring for People Living with Parkinson's Disease.
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Ho A, Bavli I, Mahal R, and McKeown MJ
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- Humans, Female, Male, Middle Aged, Privacy, Aged, Confidentiality ethics, Health Personnel ethics, Disease Progression, Parkinson Disease therapy, Artificial Intelligence ethics, Caregivers, Qualitative Research
- Abstract
Artificial intelligence (AI) has garnered tremendous attention in health care, and many hope that AI can enhance our health system's ability to care for people with chronic and degenerative conditions, including Parkinson's Disease (PD). This paper reports the themes and lessons derived from a qualitative study with people living with PD, family caregivers, and health care providers regarding the ethical dimensions of using AI to monitor, assess, and predict PD symptoms and progression. Thematic analysis identified ethical concerns at four intersecting levels: personal, interpersonal, professional/institutional, and societal levels. Reflecting on potential benefits of predictive algorithms that can continuously collect and process longitudinal data, participants expressed a desire for more timely, ongoing, and accurate information that could enhance management of day-to-day fluctuations and facilitate clinical and personal care as their disease progresses. Nonetheless, they voiced concerns about intersecting ethical questions around evolving illness identities, familial and professional care relationships, privacy, and data ownership/governance. The multi-layer analysis provides a helpful way to understand the ethics of using AI in monitoring and managing PD and other chronic/degenerative conditions.
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- 2024
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20. Ethical issues and proposed solutions in conducting practical assessment of medical students involving patients.
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Chandra A
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- Humans, Ethics, Medical education, Cultural Competency, India, Clinical Competence standards, Education, Medical standards, Education, Medical ethics, Privacy, Informed Consent ethics, Informed Consent standards, Students, Medical, Confidentiality standards, Confidentiality ethics, Personal Autonomy
- Abstract
Practical assessment involving patients plays a vital role in medical education, allowing students to demonstrate their clinical competencies. However, there are significant ethical concerns associated with these assessments that require careful consideration and resolution. The primary ethical concerns include violation of patient autonomy, lack of written informed consent, power dynamics, cultural differences, potential harm to patients, breach of privacy and confidentiality, discomfort to admitted patients, financial loss to patients, impact on other patients' care, and delays in workup/procedures. To address these concerns, measures such as respecting patient autonomy, obtaining written informed consent, ensuring patient safety, exploring alternative methods, providing reimbursement, resource planning, creating a supportive environment, developing cultural competency, putting in place a feedback system, prioritising patient care, and implementing ethical oversight and monitoring are recommended. The formulation of a guideline could be a crucial starting point, and it should be integrated into a broader ethical framework that encompasses education and training, ethical oversight, ongoing monitoring, and a culture that prioritises ethical conduct.
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- 2024
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21. Ethical Dilemmas of Using Artificial Intelligence in Medicine.
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Astărăstoae V, Rogozea LM, Leaşu F, and Ioan BG
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- Humans, Ethics, Medical, Computer Security ethics, Artificial Intelligence ethics, Confidentiality ethics, Informed Consent ethics
- Abstract
Background: Artificial intelligence (AI) is considered the fourth industrial revolution that will change the evolution of humanity technically and relationally. Although the term has been around since 1956, it has only recently become apparent that AI can revolutionize technologies and has many applications in the medical field., Areas of Uncertainty: The ethical dilemmas posed by the use of AI in medicine revolve around issues related to informed consent, respect for confidentiality, protection of personal data, and last but not least the accuracy of the information it uses., Data Sources: A literature search was conducted through PubMed, MEDLINE, Plus, Scopus, and Web of Science (2015-2022) using combinations of keywords, including: AI, future in medicine, and machine learning plus ethical dilemma., Ethics and Therapeutic Advances: The ethical analysis of the issues raised by AI used in medicine must mainly address nonmaleficence and beneficence, both in correlation with patient safety risks, ability versus inability to detect correct information from inadequate or even incorrect information. The development of AI tools that can support medical practice can increase people's access to medical information, to obtain a second opinion, for example, but it is also a source of concern among health care professionals and especially bioethicists about how confidentiality is maintained and how to maintain cybersecurity. Another major risk may be related to the dehumanization of the medical act, given that, at least for now, empathy and compassion are accessible only to human beings., Conclusions: AI has not yet managed to overcome certain limits, lacking moral subjectivity, empathy, the level of critical thinking is still insufficient, but no matter who will practice preventive or curative medicine in the next period, they will not be able to ignore AI, which under human control can be an important tool in medical practice., Competing Interests: The authors have no conflicts of interest to declare., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)
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- 2024
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22. How Should Harm Reduction Strategies Differ for Adolescents and Adults?
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Heward BJ, Yule AM, and Jackson PR
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- Humans, Adolescent, Adult, Confidentiality ethics, Social Support, Age Factors, Analgesics, Opioid adverse effects, Analgesics, Opioid therapeutic use, Drug Overdose prevention & control, Brain, Harm Reduction ethics, Personal Autonomy, Opioid-Related Disorders prevention & control
- Abstract
Overall rates of opioid use are low in adolescents; however, recent increases in mortality from overdose in adolescents have outpaced increases in the general population. This article highlights the importance of expanding evidence-based treatment for adolescent opioid use, especially medication, while also addressing key ethical considerations of harm reduction practices and how application of such practices with adolescents may differ from adults. Concepts related to adolescent populations are discussed, including autonomy, confidentiality, and brain development. Application of harm reduction practices should be age appropriate, express respect for patients' autonomy, include social support, and be accompanied by broader aims to minimize adolescent initiation, escalation, and overall harm caused by opioid use., (Copyright 2024 American Medical Association. All Rights Reserved.)
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- 2024
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23. [Analysis of the challenges and dilemmas that bioethics of the 21st century will face in the digital health era].
- Author
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Panadés Zafra R, Amorós Parramon N, Albiol-Perarnau M, and Yuguero Torres O
- Subjects
- Humans, Bioethical Issues, Bioethics, Confidentiality ethics, Mobile Applications ethics, Digital Technology ethics, Internet of Things ethics, Digital Health, Telemedicine ethics, Artificial Intelligence ethics
- Abstract
The medical history underscores the significance of ethics in each advancement, with bioethics playing a pivotal role in addressing emerging ethical challenges in digital health (DH). This article examines the ethical dilemmas of innovations in DH, focusing on the healthcare system, professionals, and patients. Artificial Intelligence (AI) raises concerns such as confidentiality and algorithmic biases. Mobile applications (Apps) empower but pose challenges of access and digital literacy. Telemedicine (TM) democratizes and reduces healthcare costs but requires addressing the digital divide and interconsultation dilemmas; it necessitates high-quality standards with patient information protection and attention to equity in access. Wearables and the Internet of Things (IoT) transform healthcare but face ethical challenges like privacy and equity. 21st-century bioethics must be adaptable as DH tools demand constant review and consensus, necessitating health science faculties' preparedness for the forthcoming changes., (Copyright © 2024 The Authors. Publicado por Elsevier España S.L.U. All rights reserved.)
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- 2024
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24. Machine Learning in Health Care: Ethical Considerations Tied to Privacy, Interpretability, and Bias.
- Author
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Hofweber T and Walker RL
- Subjects
- Humans, Privacy, Bias, Confidentiality ethics, Delivery of Health Care ethics, Machine Learning ethics
- Abstract
Machine learning models hold great promise with medical applications, but also give rise to a series of ethical challenges. In this survey we focus on training data, model interpretability and bias and the related issues tied to privacy, autonomy, and health equity., Competing Interests: Acknowledgments: The authors report no relevant conflicts of interest., (Copyright ©2024 by the North Carolina Institute of Medicine and The Duke Endowment. All rights reserved.)
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- 2024
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25. When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.
- Author
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McArdle E, Teelin KL, Borschuk A, and Brown AEC
- Subjects
- Humans, Adolescent, Male, United States, Disclosure legislation & jurisprudence, Disclosure ethics, Personal Autonomy, Parental Consent legislation & jurisprudence, Parental Consent ethics, Patient Rights legislation & jurisprudence, Child, Privacy legislation & jurisprudence, Electronic Health Records ethics, Electronic Health Records legislation & jurisprudence, Access to Information legislation & jurisprudence, Access to Information ethics, Confidentiality legislation & jurisprudence, Confidentiality ethics, Parents
- Abstract
AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.
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- 2024
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26. Contact investigation in multidrug-resistant tuberculosis: ethical challenges.
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Oo HS and Borry P
- Subjects
- Humans, Social Discrimination, Disclosure ethics, Tuberculosis, Multidrug-Resistant drug therapy, Contact Tracing ethics, Social Stigma, Confidentiality ethics
- Abstract
Contact investigation is an evidence-based intervention of multidrug-resistant tuberculosis (MDR-TB) to protect public health by interrupting the chain of transmission. In pursuit of contact investigation, patients' MDR-TB status has to be disclosed to third parties (to the minimum necessary) for tracing the contacts. Nevertheless, disclosure to third parties often unintentionally leads the MDR-TB patients suffered from social discrimination and stigma. For this reason, patients are less inclined to reveal their MDR-TB status and becomes a significant issue in contact investigation. This issue certainly turns into a negative impact on the public interest. Tension between keeping MDR-TB status confidential and safeguarding public health arises in relation to this issue. Regarding MDR-TB management, patient compliance with treatment and contact investigation are equally important. Patients might fail to comply with anti-TB therapy and be reluctant to seek healthcare due to disclosure concerns. In order to have treatment adherence, MDRTB patients should not live through social discrimination and stigma arising from disclosure and TB team has a duty to support them as a mean of reciprocity. However, implementation of contact investigation as a public health policy can still be challenging even with promising reciprocal support to the patients because MDR-TB patients are living in different contexts and situations. There can be no straight forward settlement but an appropriate justification for each distinct context is needed to strike a balance between individual confidentiality and public interest., (© 2024. The Author(s) under exclusive licence to Monash University.)
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- 2024
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27. Islamic Jurisprudence on Harm Versus Harm Scenarios in Medical Confidentiality.
- Author
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Muhsin SM
- Subjects
- Humans, Jurisprudence, Confidentiality ethics, Confidentiality legislation & jurisprudence, Islam
- Abstract
Although medical confidentiality is widely recognized as an essential principle in the therapeutic relationship, its systematic and coherent practice has been an ethically challenging duty upon healthcare providers due to various concerns of clinical, moral, religious, social, ethical and legal natures. Medical confidentiality can be breached to protect the patient and/or others if maintaining confidentiality causes serious harm. Healthcare professionals may encounter complicated situations whereby the divulgence of a patient's confidential information may pose a threat to one party whereas the concealment of such information may cause harm to another. After deliberating on the Islamic concept of harm (ḍarar), this paper focuses on the dual duty and conflicts of interests faced by healthcare professionals in the practice of medical confidentiality. Referring to serious infectious diseases with a special mention of AIDS, this study also provides discourse on how healthcare professionals deal with difficult scenarios of conflicts of interests and ethical dilemmas., (© 2023. The Author(s), under exclusive licence to Springer Nature B.V.)
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- 2024
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28. E-Health: Security, Privacy, and Ethics Requirements from a National Perspective in I. R. Iran.
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Abedian S and Riazi H
- Subjects
- Iran, Telemedicine ethics, Humans, Computer Security ethics, Confidentiality ethics, Electronic Health Records ethics
- Abstract
This paper explores the security, privacy, and ethical implications of e-health data in Iran's healthcare network. A framework is proposed to ensure security and privacy in electronic health information processing across various institutions. The framework addresses aspects such as software/hardware, communication networks, patient safety, privacy, confidentiality, online health service regulations, commercial and judicial exploitation, and education/research. The study categorizes these requirements into seven main categories to safeguard health-oriented service recipients' security and privacy.
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- 2024
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29. Ethical considerations for artificial intelligence in dermatology: a scoping review.
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Gordon ER, Trager MH, Kontos D, Weng C, Geskin LJ, Dugdale LS, and Samie FH
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- Humans, Telemedicine ethics, Informed Consent ethics, Confidentiality ethics, Diagnostic Errors ethics, Diagnostic Errors prevention & control, Computer Security ethics, Skin Diseases diagnosis, Skin Diseases therapy, Mobile Applications ethics, Artificial Intelligence ethics, Dermatology ethics, Dermatology methods
- Abstract
The field of dermatology is experiencing the rapid deployment of artificial intelligence (AI), from mobile applications (apps) for skin cancer detection to large language models like ChatGPT that can answer generalist or specialist questions about skin diagnoses. With these new applications, ethical concerns have emerged. In this scoping review, we aimed to identify the applications of AI to the field of dermatology and to understand their ethical implications. We used a multifaceted search approach, searching PubMed, MEDLINE, Cochrane Library and Google Scholar for primary literature, following the PRISMA Extension for Scoping Reviews guidance. Our advanced query included terms related to dermatology, AI and ethical considerations. Our search yielded 202 papers. After initial screening, 68 studies were included. Thirty-two were related to clinical image analysis and raised ethical concerns for misdiagnosis, data security, privacy violations and replacement of dermatologist jobs. Seventeen discussed limited skin of colour representation in datasets leading to potential misdiagnosis in the general population. Nine articles about teledermatology raised ethical concerns, including the exacerbation of health disparities, lack of standardized regulations, informed consent for AI use and privacy challenges. Seven addressed inaccuracies in the responses of large language models. Seven examined attitudes toward and trust in AI, with most patients requesting supplemental assessment by a physician to ensure reliability and accountability. Benefits of AI integration into clinical practice include increased patient access, improved clinical decision-making, efficiency and many others. However, safeguards must be put in place to ensure the ethical application of AI., Competing Interests: Conflicts of interest The authors declare no conflicts of interest., (© The Author(s) 2024. Published by Oxford University Press on behalf of British Association of Dermatologists. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2024
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30. Ethical guidance for conducting health research with online communities: A scoping review of existing guidance.
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Harris J, Germain J, McCoy E, and Schofield R
- Subjects
- Humans, COVID-19 epidemiology, Confidentiality ethics, Informed Consent ethics, Privacy, SARS-CoV-2, Biomedical Research ethics, Pandemics, Guidelines as Topic, Ethics, Research, Internet
- Abstract
Online research methods have grown in popularity due in part to the globalised and far-reaching nature of the internet but also linked to the Covid-19 pandemic whereby restrictions to travel and face to face contact necessitated a shift in methods of research recruitment and data collection. Ethical guidance exists to support researchers in conducting online research, however this is lacking within health fields. This scoping review aims to synthesise formal ethical guidance for applying online methods within health research as well as provide examples of where guidance has been used. A systematic search of literature was conducted, restricted to English language records between 2013 and 2022. Eligibility focused on whether the records were providing ethical guidance or recommendations, were situated or relevant to health disciplines, and involved the use or discussion of online research methods. Following exclusion of ineligible records and duplicate removal, three organisational ethical guidance and 24 research papers were charted and thematically analysed. Four key themes were identified within the guidance documents, 1) consent, 2) confidentiality and privacy, 3) protecting participants from harm and 4) protecting researchers from harm with the research papers describing additional context and understanding around these issues. The review identified that there are currently no specific guidelines aimed at health researchers, with the most cited guidance coming from broader methodological perspectives and disciplines or auxiliary fields. All guidance discussed each of the four key themes within the wider context of sensitive topics and vulnerable populations, areas and issues which are often prominent within health research thus highlighting the need for unifying guidance specific for health researchers. Further research should aim to understand better how online health studies apply ethical principles, to support in informing gaps across both research and guidance., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Harris et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
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- 2024
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31. Ethical considerations and concerns in the implementation of AI in pharmacy practice: a cross-sectional study.
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Hasan HE, Jaber D, Khabour OF, and Alzoubi KH
- Subjects
- Humans, Cross-Sectional Studies, Female, Male, Adult, Middle East, Surveys and Questionnaires, Africa, Northern, Informed Consent ethics, Confidentiality ethics, Middle Aged, Beneficence, Pharmacists ethics, Computer Security, Young Adult, Attitude of Health Personnel, Social Justice, Privacy, Artificial Intelligence ethics
- Abstract
Background: Integrating artificial intelligence (AI) into healthcare has raised significant ethical concerns. In pharmacy practice, AI offers promising advances but also poses ethical challenges., Methods: A cross-sectional study was conducted in countries from the Middle East and North Africa (MENA) region on 501 pharmacy professionals. A 12-item online questionnaire assessed ethical concerns related to the adoption of AI in pharmacy practice. Demographic factors associated with ethical concerns were analyzed via SPSS v.27 software using appropriate statistical tests., Results: Participants expressed concerns about patient data privacy (58.9%), cybersecurity threats (58.9%), potential job displacement (62.9%), and lack of legal regulation (67.0%). Tech-savviness and basic AI understanding were correlated with higher concern scores (p < 0.001). Ethical implications include the need for informed consent, beneficence, justice, and transparency in the use of AI., Conclusion: The findings emphasize the importance of ethical guidelines, education, and patient autonomy in adopting AI. Collaboration, data privacy, and equitable access are crucial to the responsible use of AI in pharmacy practice., (© 2024. The Author(s).)
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- 2024
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32. Envisioning the Future of Personalized Medicine: Role and Realities of Digital Twins.
- Author
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Vallée A
- Subjects
- Humans, Delivery of Health Care trends, Delivery of Health Care ethics, Delivery of Health Care methods, Informed Consent ethics, Confidentiality ethics, Precision Medicine methods, Precision Medicine trends
- Abstract
Digital twins have emerged as a groundbreaking concept in personalized medicine, offering immense potential to transform health care delivery and improve patient outcomes. It is important to highlight the impact of digital twins on personalized medicine across the understanding of patient health, risk assessment, clinical trials and drug development, and patient monitoring. By mirroring individual health profiles, digital twins offer unparalleled insights into patient-specific conditions, enabling more accurate risk assessments and tailored interventions. However, their application extends beyond clinical benefits, prompting significant ethical debates over data privacy, consent, and potential biases in health care. The rapid evolution of this technology necessitates a careful balancing act between innovation and ethical responsibility. As the field of personalized medicine continues to evolve, digital twins hold tremendous promise in transforming health care delivery and revolutionizing patient care. While challenges exist, the continued development and integration of digital twins hold the potential to revolutionize personalized medicine, ushering in an era of tailored treatments and improved patient well-being. Digital twins can assist in recognizing trends and indicators that might signal the presence of diseases or forecast the likelihood of developing specific medical conditions, along with the progression of such diseases. Nevertheless, the use of human digital twins gives rise to ethical dilemmas related to informed consent, data ownership, and the potential for discrimination based on health profiles. There is a critical need for robust guidelines and regulations to navigate these challenges, ensuring that the pursuit of advanced health care solutions does not compromise patient rights and well-being. This viewpoint aims to ignite a comprehensive dialogue on the responsible integration of digital twins in medicine, advocating for a future where technology serves as a cornerstone for personalized, ethical, and effective patient care., (©Alexandre Vallée. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 13.05.2024.)
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- 2024
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33. Lowering the age limit of access to the identity of the gamete donor by donor offspring: the argument against.
- Author
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Pennings G
- Subjects
- Humans, Male, Female, Netherlands, Age Factors, Confidentiality ethics, United Kingdom, Oocyte Donation ethics, Child, Adult, Tissue Donors
- Abstract
Countries that abolished donor anonymity have imposed age limits for access to certain types of information by donor offspring. In the UK and the Netherlands, a debate has started on whether these age limits should be lowered or abolished all together. This article presents some arguments against lowering the age limits as a general rule for all donor children. The focus is on whether one should give a child the right to obtain the identity of the donor at an earlier age than is presently stipulated. The first argument is that there is no evidence that a change in age will increase the total well-being of the donor offspring as a group. The second argument stresses that the rights language used for the donor-conceived child isolates the child from his or her family and this is unlikely to be in the best interest of the child. Finally, lowering the age limit reintroduces the genetic father in the family and expresses the bionormative ideology that contradicts gamete donation as a practice., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2024
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34. Rights and duties of genetic counsellors in Germany related to relatives at risk: comparative thoughts on the German Genetic Diagnostics Act.
- Author
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Schneider SA and Schneider UH
- Subjects
- Humans, Germany, Family, Genetic Counseling ethics, Genetic Counseling legislation & jurisprudence, Genetic Testing ethics, Genetic Testing legislation & jurisprudence, Duty to Warn ethics, Duty to Warn legislation & jurisprudence, Confidentiality legislation & jurisprudence, Confidentiality ethics
- Abstract
Genetic testing has familial implications. Counsellors find themselves in (moral) conflict between medical confidentiality (towards the patient) and a potential right or even duty to warn at-risk relatives. Legal regulations vary between countries. English literature about German law is scarce. We reviewed the literature of relevant legal cases, focussing on German law, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. This article aims to familiarise counsellors with their responsibilities, compare the situation between countries and point out legally unresolved areas.According to the German Genetic Diagnostics Act (Gendiagnostikgesetz) in case of an 'avoidable or treatable' genetic disorder, geneticists ought to confine themselves to the obligated advice to the patient. Whether a breach of the duty of confidentiality can be justified in exceptional cases by 'necessity as justification' for actively informing relatives at risk remains legally unclear. In case of a 'neither avoidable nor treatable' genetic disease, geneticists should also refrain from actively informing relatives as the justifiable state of emergency does not permit to break the duty of confidentiality., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2024
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35. Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation.
- Author
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Ligtenberg W, Stolper M, and Molewijk B
- Subjects
- Humans, Ethics, Clinical, Empathy, Confidentiality ethics, Morals, Ethics Consultation
- Abstract
Background: Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES., Method: Based on experiences and research into MCD facilitators' needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general., Results: The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases., Conclusions: This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools., (© 2024. The Author(s).)
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- 2024
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36. [Ethical and legal implications of digital mental health applications].
- Author
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Gómez Lanz J, de Montalvo Jååskelåinen F, Morente Parra V, and Halty Barrutieta L
- Subjects
- Humans, Physician-Patient Relations ethics, Telemedicine ethics, Telemedicine legislation & jurisprudence, Wearable Electronic Devices ethics, Computer Security legislation & jurisprudence, Confidentiality legislation & jurisprudence, Confidentiality ethics, Mental Health, Mobile Applications ethics, Mobile Applications legislation & jurisprudence
- Abstract
The digitization of mental health enables significant shifts in clinical practice by harnessing vast amounts of data derived from the use of apps and wearables to enhance medical research, patient care, and health system efficiency. However, this process brings forth pertinent ethical and legal risks. Ethically, concerns primarily revolve around safeguarding the privacy and confidentiality of sensitive data, alongside the transformation of the doctor-patient relationship through technological interaction. Within the regulatory realm, issues encompass the classification of these tools as medical products, ensuring normative assurance of effective protection of mental health data, and addressing potential legal risks within this domain. This article aims to provide an overarching view of this landscape, serving as a catalyst for the technological, ethical, and legal discourse necessitated by digital mental health.
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- 2024
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37. Confidentiality in the Care of Adolescents: Technical Report.
- Author
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Chung RJ, Lee JB, Hackell JM, and Alderman EM
- Subjects
- Humans, Adolescent, Adolescent Health Services ethics, Adolescent Health Services legislation & jurisprudence, United States, Confidentiality ethics, Confidentiality legislation & jurisprudence
- Abstract
Confidentiality is a foundational element of high-quality, accessible, and equitable health care. Despite strong grounding in federal and state laws, professional guidelines, and ethical standards, health care professionals and adolescent patients face a range of complexities and barriers to seeking and providing confidential care to adolescents across different settings and circumstances. The dynamic needs of adolescents, the oftentimes competing interests of key stakeholders, the rapidly evolving technological context of care, and variable health care billing and claims requirements are all important considerations in understanding how to optimize care to focus on and meet the needs of the adolescent patient. The following assessment of the evolving evidence base offers a view of the current state and best practices while pointing to numerous unmet needs and opportunities for improvement in the care experiences of youth as well as their health outcomes., (Copyright © 2024 by the American Academy of Pediatrics.)
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- 2024
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38. Confidentiality in the Care of Adolescents: Policy Statement.
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Chung RJ, Lee JB, Hackell JM, and Alderman EM
- Subjects
- Humans, Adolescent, United States, Electronic Health Records ethics, Electronic Health Records legislation & jurisprudence, Electronic Health Records standards, Confidentiality ethics, Confidentiality legislation & jurisprudence
- Abstract
Confidentiality is an essential component of high-quality health care for adolescents and young adults and can have an impact on the health care experiences and health outcomes of youth. Federal and state laws, professional guidelines, and ethical standards provide a core framework for guidance in the implementation of confidentiality protections in clinical practice. This policy statement provides recommendations for pediatricians and other pediatric health care professionals, clinics, health systems, payers, and electronic health record developers to optimize confidentiality practices and protections for adolescents and young adults across the spectrum of care., (Copyright © 2024 by the American Academy of Pediatrics.)
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- 2024
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39. Determining the state of guidance on pediatric biobanking for researchers, HRECS, and families: Regulatory mapping of international guidance.
- Author
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Prince S, Then SN, and O'Grady KA
- Subjects
- Humans, Child, Pediatrics ethics, Informed Consent legislation & jurisprudence, Guidelines as Topic, Family, Confidentiality ethics, Biological Specimen Banks ethics, Biological Specimen Banks legislation & jurisprudence, Biomedical Research ethics
- Abstract
Biobanking-the storage of human biological samples, including tissue, blood, urine, and genetic data-raises many ethical, legal, and social issues, including confidentiality and privacy. Pediatric biobanking is more complicated, with difficulties arising because children lack capacity to consent and acquire this capacity upon maturity when the research is still ongoing. Yet given the limited availability of pediatric samples, the translational nature of biobanking presents a unique opportunity to share samples and produce clinically necessary information about pediatric development and diseases. Guidance on navigating these legal and ethical difficulties is needed for those involved in pediatric biobanking-including researchers, participants, and families, and those involved in biobank governance. This paper seeks to map the current regulatory framework governing pediatric biobanking to determine what guidance is currently offered. Regulatory mapping of current international and national guidelines on pediatric biobanking addressing the ethical, legal, and social nuances of pediatric biobanking was undertaken. This paper finds that international guidelines around biobanking are mostly for adults, and even when pediatric-specific, documents are non-binding, inconsistent, or only limited guidance is offered on a range of important issues specific to pediatric biobanks. Conclusion: This paper shows a need for consistent, comprehensive, and clear regulation on pediatric biobanking so that research can more quickly, efficiently, and ethically be translated to useful information and treatment in pediatric care. What is Known: • Pediatric biobanking presents new opportunities to conduct valuable translational research to benefit pediatric populations. However, the storage of pediatric biological samples raises many ethical, legal and social issues-in part because child participants may be considered to lack capacity to consent but can acquire this capacity upon maturity when the research is still ongoing. Pediatric biobanks must grapple with issues of consent, confidentiality and privacy, and long-term participation regarding child participants. What is New: • Regulatory guidance on these ethical, legal, and social issues is needed for researchers, participants, and families and those involved in biobank governance. This paper identifies nationally specific and international guidance on biobanking and summarizes the guidance provided in relation to these pediatric specific issues. It finds that most guidance is non-binding and inconsistent between guidance documents and may offer only limited guidance to stakeholders. A need for consistent, comprehensive, and clear regulation on pediatric biobanking is needed at an international level to enable research., (© 2024. The Author(s).)
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- 2024
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40. An Ethical Examination of Donor Anonymity and a Defence of a Legal Ban on Anonymous Donation and the Establishment of a Central Register.
- Author
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Symons X and Kha H
- Subjects
- Humans, Australia, Male, United Kingdom, Parents, Tissue and Organ Procurement legislation & jurisprudence, Tissue and Organ Procurement ethics, Spermatozoa, Tissue Donors legislation & jurisprudence, Tissue Donors ethics, Confidentiality legislation & jurisprudence, Confidentiality ethics, Registries ethics
- Abstract
Many if not most sperm donors in the early years of IVF donated under conditions of anonymity. There is, however, a growing awareness of the ethical cost of withholding identifying parental information from donor children. Today, anonymous donation is illegal in many jurisdictions, and some jurisdictions have gone as far as retrospectively invalidating contracts whereby donors were guaranteed anonymity. This article provides a critical evaluation of the ethics and legality of anonymous donation. We defend Australian and British legislation that has outlawed donor anonymity, and we argue for the establishment of a central registry that provides donor children with the ability to easily and reliably access identifying information about their donor parents., (© 2023. Journal of Bioethical Inquiry Pty Ltd.)
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- 2024
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41. Ethical dimensions in telemedicine - balancing technology, responsible care, and patient protection.
- Author
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Jedličková A
- Subjects
- Humans, Patient Rights ethics, Confidentiality ethics, Computer Security ethics, Physician-Patient Relations ethics, Telemedicine ethics
- Abstract
Telemedicine, defined as the practice of delivering healthcare services remotely using information and communications technologies, raises a plethora of ethical considerations. As telemedicine evolves, its ethical dimensions play an increasingly pivotal role in balancing the benefits of advanced technologies, ensuring responsible healthcare practices within telemedicine environments, and safeguarding patient rights. Healthcare providers, patients, policymakers, and technology developers involved in telemedicine encounter numerous ethical challenges that need to be addressed. Key ethical topics include prioritizing the protection of patient rights and privacy, which entails ensuring equitable access to remote healthcare services and maintaining the doctor-patient relationship in virtual settings. Additional areas of focus encompass data security concerns and the quality of healthcare delivery, underscoring the importance of upholding ethical standards in the digital realm. A critical examination of these ethical dimensions highlights the necessity of establishing binding ethical guidelines and legal regulations. These measures could assist stakeholders in formulating effective strategies and methodologies to navigate the complex telemedicine landscape, ensuring adherence to the highest ethical standards and promoting patient welfare. A balanced approach to telemedicine ethics should integrate the benefits of telemedicine with proactive measures to address emerging ethical challenges and should be grounded in a well-prepared and respected ethical framework.
- Published
- 2024
42. Digital Privacy and Data Protection: From Ethical Principles to Action.
- Author
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Gupta R
- Subjects
- Humans, Computer Security, Moral Obligations, Privacy, Confidentiality ethics
- Published
- 2023
- Full Text
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43. Therapists or Replicants? Ethical, Legal, and Social Considerations for Using ChatGPT in Therapy.
- Author
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Amram B, Klempner U, Shturman S, and Greenbaum D
- Subjects
- Humans, Confidentiality ethics, Artificial Intelligence, Psychotherapy
- Published
- 2023
- Full Text
- View/download PDF
44. Ethical issues in oocyte banking for nonautologous use: an Ethics Committee opinion.
- Subjects
- Biological Specimen Banks economics, Compensation and Redress ethics, Confidentiality ethics, Counseling ethics, Female, Humans, Medical Tourism ethics, Oocyte Donation economics, Terminology as Topic, Biological Specimen Banks ethics, Ethics Committees, Oocyte Donation ethics, Tissue Donors ethics
- Abstract
Ethical considerations for the banking of oocytes for nonautologous use are discussed., (Copyright © 2021 American Society for Reproductive Medicine. Published by Elsevier Inc. All rights reserved.)
- Published
- 2021
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45. Doctors' criminal law duty to report consensual sexual activity between adolescents: legal and clinical issues.
- Author
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Mathews B and Sanci LA
- Subjects
- Adolescent, Australia epidemiology, Consensus, Contraception methods, Female, Health Services Accessibility legislation & jurisprudence, Humans, Male, Patient Rights legislation & jurisprudence, Presumed Consent legislation & jurisprudence, Sexually Transmitted Diseases diagnosis, Sexually Transmitted Diseases prevention & control, Confidentiality ethics, Contraception ethics, Criminal Law legislation & jurisprudence, Physicians ethics, Sexual Behavior ethics
- Published
- 2021
- Full Text
- View/download PDF
46. Fundamental privacy rights in a pandemic state.
- Author
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Carvalho T, Faria P, Antunes L, and Moniz N
- Subjects
- Civil Rights, Computer Security, Confidentiality trends, Disclosure, Humans, Privacy, SARS-CoV-2 metabolism, SARS-CoV-2 pathogenicity, COVID-19 transmission, Confidentiality ethics, Pandemics ethics
- Abstract
Faced with the emergence of the Covid-19 pandemic, and to better understand and contain the disease's spread, health organisations increased the collaboration with other organisations sharing health data with data scientists and researchers. Data analysis assists such organisations in providing information that could help in decision-making processes. For this purpose, both national and regional health authorities provided health data for further processing and analysis. Shared data must comply with existing data protection and privacy regulations. Therefore, a robust de-identification procedure must be used, and a re-identification risk analysis should also be performed. De-identified data embodies state-of-the-art approaches in Data Protection by Design and Default because it requires the protection of direct and indirect identifiers (not just direct). This article highlights the importance of assessing re-identification risk before data disclosure by analysing a data set of individuals infected by Covid-19 that was made available for research purposes. We stress that it is highly important to make this data available for research purposes and that this process should be based on the state of the art methods in Data Protection by Design and by Default. Our main goal is to consider different re-identification risk analysis scenarios since the information on the intruder side is unknown. Our conclusions show that there is a risk of identity disclosure for all of the studied scenarios. For one, in particular, we proceed to an example of a re-identification attack. The outcome of such an attack reveals that it is possible to identify individuals with no much effort., Competing Interests: The authors have read the journal’s policy and have the following competing interests: PF is a paid employee of TekPrivacy. There are no patents, products in development, or marketed products associated with this research to declare. This does not alter our adherence to PLOS ONE policies on sharing data and materials.
- Published
- 2021
- Full Text
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47. Social Determinants of Health: Enhancing Health Equity.
- Author
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Peregrin T
- Subjects
- Confidentiality ethics, Data Collection ethics, Humans, Health Equity, Healthcare Disparities, Social Determinants of Health ethics
- Published
- 2021
- Full Text
- View/download PDF
48. Sharing ICU Patient Data Responsibly Under the Society of Critical Care Medicine/European Society of Intensive Care Medicine Joint Data Science Collaboration: The Amsterdam University Medical Centers Database (AmsterdamUMCdb) Example.
- Author
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Thoral PJ, Peppink JM, Driessen RH, Sijbrands EJG, Kompanje EJO, Kaplan L, Bailey H, Kesecioglu J, Cecconi M, Churpek M, Clermont G, van der Schaar M, Ercole A, Girbes ARJ, and Elbers PWG
- Subjects
- Confidentiality ethics, Confidentiality legislation & jurisprudence, Databases, Factual ethics, Databases, Factual legislation & jurisprudence, Health Information Exchange ethics, Health Information Exchange legislation & jurisprudence, Health Insurance Portability and Accountability Act, Hospitals, University ethics, Hospitals, University legislation & jurisprudence, Hospitals, University standards, Humans, Intensive Care Units standards, Netherlands, United States, Confidentiality standards, Databases, Factual standards, Health Information Exchange standards, Intensive Care Units organization & administration, Societies, Medical standards
- Abstract
Objectives: Critical care medicine is a natural environment for machine learning approaches to improve outcomes for critically ill patients as admissions to ICUs generate vast amounts of data. However, technical, legal, ethical, and privacy concerns have so far limited the critical care medicine community from making these data readily available. The Society of Critical Care Medicine and the European Society of Intensive Care Medicine have identified ICU patient data sharing as one of the priorities under their Joint Data Science Collaboration. To encourage ICUs worldwide to share their patient data responsibly, we now describe the development and release of Amsterdam University Medical Centers Database (AmsterdamUMCdb), the first freely available critical care database in full compliance with privacy laws from both the United States and Europe, as an example of the feasibility of sharing complex critical care data., Setting: University hospital ICU., Subjects: Data from ICU patients admitted between 2003 and 2016., Interventions: We used a risk-based deidentification strategy to maintain data utility while preserving privacy. In addition, we implemented contractual and governance processes, and a communication strategy. Patient organizations, supporting hospitals, and experts on ethics and privacy audited these processes and the database., Measurements and Main Results: AmsterdamUMCdb contains approximately 1 billion clinical data points from 23,106 admissions of 20,109 patients. The privacy audit concluded that reidentification is not reasonably likely, and AmsterdamUMCdb can therefore be considered as anonymous information, both in the context of the U.S. Health Insurance Portability and Accountability Act and the European General Data Protection Regulation. The ethics audit concluded that responsible data sharing imposes minimal burden, whereas the potential benefit is tremendous., Conclusions: Technical, legal, ethical, and privacy challenges related to responsible data sharing can be addressed using a multidisciplinary approach. A risk-based deidentification strategy, that complies with both U.S. and European privacy regulations, should be the preferred approach to releasing ICU patient data. This supports the shared Society of Critical Care Medicine and European Society of Intensive Care Medicine vision to improve critical care outcomes through scientific inquiry of vast and combined ICU datasets., Competing Interests: Dr. Sijbrands’ institution received funding from European Institute of Innovation and Technology (EIT) Health and Amgen. Drs. Kaplan and Bailey received funding from Society of Critical Care Medicine. Dr. Cecconi received funding from Directed Systems, Edwards Lifesciences, and Cheetah Medical. Dr. Churpek’s institution received funding from an EarlySense research grant; he is supported by National Institutes of Health (NIH) R01 (GM123193), and he has a patent pending for risk stratification algorithm for hospitalized patients (money from royalties from the University of Chicago). Dr. Clermont received funding from the NIH, Department of Defense, National Science Foundation, and NOMA AI. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine and Wolters Kluwer Health, Inc.)
- Published
- 2021
- Full Text
- View/download PDF
49. [Ethical and legal questions of anonymity and confidentiality in gamete donation].
- Author
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Riaño-Galán I, Martínez González C, and Gallego Riestra S
- Subjects
- Adult, Female, Germ Cells, Humans, Infant, Newborn, Privacy, Spain, Tissue Donors, Confidentiality ethics, Oocyte Donation ethics
- Abstract
Spain is the European country where more assisted reproduction techniques (ART) are performed, reaching 9% of newborns. The objective of this article is to introduce the legal framework and to analyze some ethical questions, not without controversy, in relation to the anonymity of gamete donors and the concealment of origin by ART from their children. Spanish legislation establishes the relative anonymity of donors: both gamete recipients and born children have the right to obtain general information about them as long as their identity is not included, but in situations of risk to the life and health of the children allows your bankruptcy. Likewise, an unequivocal right to privacy and confidentiality of submission to the ART is established. The movement aimed at introducing in our country a legislative amendment that ends the anonymity of gamete donors is based on the right of those children to know their biological origin. Along with legal changes, the attitude of parents and professionals must gradually change towards more transparent and responsible communication, based on the experiences of adults conceived by these techniques, and those adopted. Building values such as trust and truth in the family relationships from responsibility requires placing the children, largely forgotten and the most vulnerable part, at the center of the debate., (Copyright © 2021 Asociación Española de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.)
- Published
- 2021
- Full Text
- View/download PDF
50. Privacy versus Public Health? A Reassessment of Centralised and Decentralised Digital Contact Tracing.
- Author
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White L and van Basshuysen P
- Subjects
- COVID-19 epidemiology, Health Policy, Humans, Information Storage and Retrieval ethics, Public Health, SARS-CoV-2, Smartphone, Confidentiality ethics, Contact Tracing ethics, Contact Tracing methods, Digital Technology, Information Storage and Retrieval methods, Mobile Applications, Privacy
- Abstract
At the beginning of the COVID-19 pandemic, high hopes were placed on digital contact tracing. Digital contact tracing apps can now be downloaded in many countries, but as further waves of COVID-19 tear through much of the northern hemisphere, these apps are playing a less important role in interrupting chains of infection than anticipated. We argue that one of the reasons for this is that most countries have opted for decentralised apps, which cannot provide a means of rapidly informing users of likely infections while avoiding too many false positive reports. Centralised apps, in contrast, have the potential to do this. But policy making was influenced by public debates about the right app configuration, which have tended to focus heavily on privacy, and are driven by the assumption that decentralised apps are "privacy preserving by design". We show that both types of apps are in fact vulnerable to privacy breaches, and, drawing on principles from safety engineering and risk analysis, compare the risks of centralised and decentralised systems along two dimensions, namely the probability of possible breaches and their severity. We conclude that a centralised app may in fact minimise overall ethical risk, and contend that we must reassess our approach to digital contact tracing, and should, more generally, be cautious about a myopic focus on privacy when conducting ethical assessments of data technologies.
- Published
- 2021
- Full Text
- View/download PDF
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