ethique_confidentialité

Children's Sexual Development and Privacy: A Call for Evidence-Based Ethical Policy.

Wed, 01 May 2024 04:00:00 +0000

Clinical Pediatrics; 05/01/2024
(AN 176610706); ISSN: 00099228
CINAHL Complete

Beyond Public Health and Private Choice: Breastfeeding, Embodiment and Public Health Ethics

Mon, 08 Apr 2024 00:00:00 +0000

Asian Bioeth Rev. 2023 Oct 26;16(2):249-266. doi: 10.1007/s41649-023-00259-0. eCollection 2024 Apr.

ABSTRACT

The key objective of this paper is to emphasize the importance of acknowledging breastfeeding as an embodied social practice within interventions related to breastfeeding and lactation and illustrate how this recognition holds implications for public health ethics debates. Recent scholarship has shown that breastfeeding and lactation support interventions undermine women's autonomy. However, substantial discourse is required to determine how to align with public health goals while also recognizing the embodied experiences of breastfeeding and lactating individuals. Presently, interventions in this realm predominantly revolve around health-related messaging and the promotion of individual behaviors, often neglecting the systemic and structural factors that influence choices and practices. I closely examine breastfeeding interventions in India, in particular Mothers' Absolute Affection health promotion program, along with breastfeeding narratives. I argue that for such interventions to evolve, they must acknowledge the intrinsic embodied social nature of breastfeeding during their design and implementation. Furthermore, it is important to emphasize that achieving equity and justice objectives necessitates moving beyond the confines of both conventional public health frameworks and frameworks solely centered on private choices. Instead, a more encompassing approach that embraces the concept of embodiment should be adopted.

PMID:38586574 | PMC:PMC10994897 | DOI:10.1007/s41649-023-00259-0

Talking Ethics Early in Health Data Public Private Partnerships.

Fri, 15 Mar 2024 04:00:00 +0000

Journal of Business Ethics; 03/15/2024
Data access and data sharing are vital to advance medicine. A growing number of public private partnerships are set up to facilitate data access and sharing, as private and public actors possess highly complementary health data sets and treatment development resources. However, the priorities and incentives of public and private organizations are frequently in conflict. This has complicated partnerships and sparked public concerns around ethical issues such as trust, justice or privacy—in turn raising an important problem in business and data ethics: how can ethical theory inform the practice of public and private partners to mitigate misaligned incentives, and ensure that they can deliver societally beneficial innovation? In this paper, we report on the development of the Swiss Personalized Health Network's ethical guidelines for health data sharing in public private partnerships. We describe the process of identifying ethical issues and engaging core stakeholders to incorporate their practical reality on these issues. Our report highlights core ethical issues in health data public private partnerships and provides strategies for how to overcome these in the Swiss health data context. By agreeing on and formalizing ethical principles and practices at the beginning of a partnership, partners and society can benefit from a relationship built around a mutual commitment to ethical principles. We present this summary in the hope that it will contribute to the global data sharing dialogue.
(AN 176006260); ISSN: 01674544
Health Business Elite

Talking Ethics Early in Health Data Public Private Partnerships

Fri, 15 Mar 2024 00:00:00 +0000

J Bus Ethics. 2024;190(3):649-659. doi: 10.1007/s10551-023-05425-w. Epub 2023 May 18.

ABSTRACT

Data access and data sharing are vital to advance medicine. A growing number of public private partnerships are set up to facilitate data access and sharing, as private and public actors possess highly complementary health data sets and treatment development resources. However, the priorities and incentives of public and private organizations are frequently in conflict. This has complicated partnerships and sparked public concerns around ethical issues such as trust, justice or privacy-in turn raising an important problem in business and data ethics: how can ethical theory inform the practice of public and private partners to mitigate misaligned incentives, and ensure that they can deliver societally beneficial innovation? In this paper, we report on the development of the Swiss Personalized Health Network's ethical guidelines for health data sharing in public private partnerships. We describe the process of identifying ethical issues and engaging core stakeholders to incorporate their practical reality on these issues. Our report highlights core ethical issues in health data public private partnerships and provides strategies for how to overcome these in the Swiss health data context. By agreeing on and formalizing ethical principles and practices at the beginning of a partnership, partners and society can benefit from a relationship built around a mutual commitment to ethical principles. We present this summary in the hope that it will contribute to the global data sharing dialogue.

PMID:38487176 | PMC:PMC10933190 | DOI:10.1007/s10551-023-05425-w

Teaching medical ethics and medical professionalism in Saudi public and private medical schools

Sat, 09 Mar 2024 08:25:03 +0000

Author Names: AlRukban M.,Alajlan F.,Alnasser A.,Almousa H.,Alzomia S.,Almushawah A.

Database Source: Embase Weekly Updates

Journal Title: PLoS ONE,PLoS ONE

Article Title: Teaching medical ethics and medical professionalism in Saudi public and private medical schools

Year: 2024

Issue: 2 February

Volume: 19

Abstract: Medical ethics and professionalism are two essential parts of building up the identity of a competent physician. This study was conducted to determine the nature, content, and methods of medical ethics and professionalism education in Saudi public and private medical schools. It also sought to identify the challenges and obstacles in teaching and assessing medical ethics and professionalism and suggest appropriate changes. A cross-sectional study was carried out in Saudi private and public medical schools. To achieve the study's aim, an assessment tool in the form of a novel self-administered questionnaire was developed, piloted, and then used. A representative from each of the 28 Saudi medical schools participated in the study. Twenty-four (82.1%) responding medical schools have no medical ethics department. Most of the medical schools (64.2%) have 25% or less of their faculty staff who teach ethics holding a qualification in medical ethics. Most schools have a specific course for medical ethics and professionalism (85.7% and 57.1%, respectively). Multiple-choice questioning is the most popular assessment method in medical ethics and professionalism courses (89.3% and 60.7%, respectively). The need for more qualified staff and clear guidelines/resources is a significant drawback to the teaching of medical ethics. Therefore, the study recommends developing national guidelines dedicated to the undergraduate teaching curriculum from which courses would be designed to enhance medical ethics and medical professionalism.<br/>Copyright © 2024 AlRukban et al.

Patient Privacy Is Ethical Concern with DTC Tests.

Fri, 01 Dec 2023 05:00:00 +0000

Medical Ethics Advisor; 12/01/2023
The article focuses on the privacy concerns associated with direct-to-consumer (DTC) lab tests, revealing that a study found most U.S. companies offering such tests are not compliant with patient privacy regulations, raising issues about data protection, and sample handling.
(AN 173886919); ISSN: 08860653
CINAHL Complete

Translating Commercial Health Data Privacy Ethics into Change

Mon, 06 Nov 2023 00:00:00 +0000

Am J Bioeth. 2023 Nov;23(11):7-10. doi: 10.1080/15265161.2023.2263286. Epub 2023 Oct 25.

NO ABSTRACT

PMID:37930943 | DOI:10.1080/15265161.2023.2263286

Translating Commercial Health Data Privacy Ethics into Change.

Wed, 01 Nov 2023 04:00:00 +0000

American Journal of Bioethics; 11/01/2023
(AN 173227811); ISSN: 15265161
CINAHL Complete

Digital Privacy and Data Protection: From Ethical Principles to Action.

Wed, 01 Nov 2023 04:00:00 +0000

American Journal of Bioethics; 11/01/2023
(AN 173227806); ISSN: 15265161
CINAHL Complete

The Ethical Data Practices Framework and Its Implications for Data Privacy Relations between the United States and the European Union.

Wed, 01 Nov 2023 04:00:00 +0000

American Journal of Bioethics; 11/01/2023
(AN 173227810); ISSN: 15265161
CINAHL Complete

Artificial Intelligence (AI) Trust Framework and Maturity Model: Applying an Entropy Lens to Improve Security, Privacy, and Ethical AI

Sat, 28 Oct 2023 00:00:00 +0000

Entropy (Basel). 2023 Oct 9;25(10):1429. doi: 10.3390/e25101429.

ABSTRACT

Recent advancements in artificial intelligence (AI) technology have raised concerns about the ethical, moral, and legal safeguards. There is a pressing need to improve metrics for assessing security and privacy of AI systems and to manage AI technology in a more ethical manner. To address these challenges, an AI Trust Framework and Maturity Model is proposed to enhance trust in the design and management of AI systems. Trust in AI involves an agreed-upon understanding between humans and machines about system performance. The framework utilizes an "entropy lens" to root the study in information theory and enhance transparency and trust in "black box" AI systems, which lack ethical guardrails. High entropy in AI systems can decrease human trust, particularly in uncertain and competitive environments. The research draws inspiration from entropy studies to improve trust and performance in autonomous human-machine teams and systems, including interconnected elements in hierarchical systems. Applying this lens to improve trust in AI also highlights new opportunities to optimize performance in teams. Two use cases are described to validate the AI framework's ability to measure trust in the design and management of AI systems.

PMID:37895550 | PMC:PMC10606888 | DOI:10.3390/e25101429

The future of FemTech ethics & privacy – a global perspective.

Fri, 27 Oct 2023 04:00:00 +0000

BMC Medical Ethics; 10/27/2023
(AN 173270853); ISSN: 14726939
CINAHL Complete

The future of FemTech ethics & privacy - a global perspective

Fri, 27 Oct 2023 00:00:00 +0000

BMC Med Ethics. 2023 Oct 27;24(1):88. doi: 10.1186/s12910-023-00976-z.

ABSTRACT

We discuss the concept of women's empowerment in FemTech, considering cultural and legal differences, ethical concerns, and legal consequences. We claim that it is crucial to prioritize privacy, a fundamental right, especially in the case of changes in laws related to women's health, such as Roe v. Wade in the US.

PMID:37891591 | PMC:PMC10612147 | DOI:10.1186/s12910-023-00976-z

The Ethical Data Practices Framework and Its Implications for Data Privacy Relations between the United States and the European Union

Wed, 25 Oct 2023 00:00:00 +0000

Am J Bioeth. 2023 Nov;23(11):29-33. doi: 10.1080/15265161.2023.2256618. Epub 2023 Oct 25.

NO ABSTRACT

PMID:37879019 | DOI:10.1080/15265161.2023.2256618

Digital Privacy and Data Protection: From Ethical Principles to Action

Wed, 25 Oct 2023 00:00:00 +0000

Am J Bioeth. 2023 Nov;23(11):24-26. doi: 10.1080/15265161.2023.2256292. Epub 2023 Oct 25.

NO ABSTRACT

PMID:37879010 | DOI:10.1080/15265161.2023.2256292

Roles of public service and private stakeholders in the 2017-2018 listeriosis epidemic in South Africa: An ethical conjecture

Wed, 25 Oct 2023 00:00:00 +0000

J Emerg Manag. 2023 Special Issue on TIEMS;21(8):145-162. doi: 10.5055/jem.0711.

ABSTRACT

The aim of this article is to carry a bioethical and a limited policy analysis on the progression and aftermath of the 2017-2018 listeriosis epidemic or disaster in South Africa. This links the context of the listeriosis epidemic/disaster to the overall public health systems, disaster medicine, and ethics in South Africa, with specific focus on standards of public service and private stakeholder conduct in the country. The public service angle is unpacked in terms the policy framework relevant to ethics and public health/disaster management. In addition, the process and ethical implications of the management, as well as the role of the various stakeholders, in the 2017-2018 listeriosis epidemic/disaster in South Africa are analyzed and reflected upon. Results of the current study indicate that actions of the public health officials and biomedical scientists, who investigated the listeriosis epidemic/disaster as public servants, were executed in line with the code of conduct of the public service in South Africa. The relevant public service legislation and ethical norms of the public service in South Africa were also adhered to. A slightly different approach was discovered in the conduct of the ready-to-eat (RTE) meat producer that had owned the factory, which was identified as the source of the listeriosis epidemic/disaster. The narrative of online resources indicates that there were many negative outcomes of the 2017-2018 listeriosis epidemic/-disaster in South Africa. Those were stories about negative outcomes of the epidemic that impacted individuals, who were listeriosis sufferers. Their voices and their stories' representation provide an important resource of data on the impacts on the complex disasters on the South African population. Novel approaches are proposed to address the challenges identified along the public-private goods continuum and approaches to food production and access to sources of dietary protein in South Africa.

PMID:37878388 | DOI:10.5055/jem.0711

Privacy and ethical challenges of the Amelogenin sex test in forensic paternity/kinship analysis: Insights from a 13-year case history

Mon, 16 Oct 2023 00:00:00 +0000

Forensic Sci Int Synerg. 2023 Sep 29;7:100440. doi: 10.1016/j.fsisyn.2023.100440. eCollection 2023.

ABSTRACT

The Amelogenin sex test included in forensic DNA typing kits has the potential to identify congenital conditions such as differences/disorders of sex development (DSD). It can also reveal mismatches between genotypic sex and gender marker in identity documents of transgender persons who obtained legal gender recognition. In a 13-year case history of paternity/kinship tests, involving n = 962 females and n = 1001 males, two mismatches between Amelogenin sex test (male) and gender marker (female), and three cases of chromosomal DSD (Klinefelter syndrome) were observed. The concrete risk of observing Amelogenin anomalies, their potential causes, and the context in which they occur (forensic, i.e. non-medical) mean that laboratory operators are called to strike a complex balance between privacy interests and individual health rights when providing preliminary information and reporting Amelogenin incidental findings. This case history argues for the need of a more responsible approach towards the Amelogenin sex test in the forensic community.

PMID:37840559 | PMC:PMC10568343 | DOI:10.1016/j.fsisyn.2023.100440

Practical, Privacy and Ethical, and Philosophical Considerations for Using Big Data in Medical Education

Fri, 06 Oct 2023 00:00:00 +0000

Acad Med. 2024 Feb 1;99(2):131-133. doi: 10.1097/ACM.0000000000005479. Epub 2023 Oct 6.

ABSTRACT

In this issue of Academic Medicine , Thelen and colleagues present a thoughtful perspective on the emerging opportunity to use longitudinal educational data to improve graduate medical education and optimize the education of individual residents, and call for the accelerated development of large interinstitutional data sets for this purpose. Such applications of big data to medical education hold great promise in terms of informing the teaching of individuals, enhancing transitions between phases of training and between institutions, and permitting better longitudinal education research. At the same time, there is a tension between whose data they are and consequently how they ought to be used. This commentary proposes some practical, privacy and ethical, and philosophical considerations that need to be explored as early efforts to aggregate data across the medical education continuum mature and new efforts are undertaken.

PMID:37801570 | DOI:10.1097/ACM.0000000000005479

Ethically Challenged: Private Equity Storms US Health Care.

Sun, 01 Oct 2023 04:00:00 +0000

Journal of Health Politics, Policy & Law; 10/01/2023
(AN 171828200); ISSN: 03616878
Health Business Elite

Artificial intelligence ethics in precision oncology: balancing advancements in technology with patient privacy and autonomy

Mon, 18 Sep 2023 00:00:00 +0000

Explor Target Antitumor Ther. 2023;4(4):685-689. doi: 10.37349/etat.2023.00160. Epub 2023 Aug 31.

ABSTRACT

Precision oncology is a rapidly evolving field that uses advanced technologies to deliver personalized cancer care based on a patient's unique genetic and clinical profile. The use of artificial intelligence (AI) in precision oncology has shown great potential to improve diagnosis, treatment planning, and treatment outcomes. However, the integration of AI in precision oncology also raises important ethical considerations related to patient privacy, autonomy, and protection from bias. In this opinion paper, an overview is provided of previous studies that have explored the use of AI in precision oncology and the ethical considerations associated with this technology. The conclusions of these studies are compared, and the importance of approaching the use of AI in precision oncology with caution is emphasized. It is stressed that patient privacy, autonomy, and protection from bias should be made central to the development and use of AI in precision oncology. Clear guidelines and regulations must be established to ensure that AI is used ethically and for the benefit of patients. The use of AI in precision oncology has the potential to revolutionize cancer care, but it should be ensured that it striked a balance between advancements in technology and ethical considerations. In conclusion, the use of AI in precision oncology is a promising development that has the potential to improve cancer outcomes. However, ethical considerations related to patient privacy, autonomy, and protection from bias must be central to the development and use of AI in precision oncology.

PMID:37720345 | PMC:PMC10501889 | DOI:10.37349/etat.2023.00160

When the Private and the Public Self Don't Align: The Role of Discrepant Moral Identity Dimensions in Processing Inconsistent CSR Information.

Fri, 01 Sep 2023 04:00:00 +0000

Journal of Business Ethics; 09/01/2023
Inconsistent information between an organization's corporate social responsibility (CSR) commitments and perceived CSR (in-)action is a big challenge for organizations because this is typically associated with perceptions of corporate hypocrisy and related negative stakeholder reactions. However, in contrast to the prevailing corporate hypocrisy literature we argue that inconsistent CSR information does not always correspond to perceptions of corporate hypocrisy; rather, responses depend on individual predispositions in processing CSR-related information. In this study, we investigate how an individual's moral identity shapes reactions to inconsistent CSR information. The results of our three studies show that individuals who symbolize—i.e., display—their moral identity to the public more than they internalize moral values react less negatively to inconsistent CSR information. We also show that this weakens their anger and willingness to change company behavior. Furthermore, we find that this effect is amplified for extraverted but weakened for neurotic individuals. Our findings underline the importance of individual predispositions in processing CSR information.
(AN 171882407); ISSN: 01674544
Health Business Elite

Ethical considerations when co-analyzing ancient DNA and data from private genetic databases

Fri, 04 Aug 2023 00:00:00 +0000

Am J Hum Genet. 2023 Sep 7;110(9):1447-1453. doi: 10.1016/j.ajhg.2023.06.011. Epub 2023 Aug 3.

ABSTRACT

Ancient DNA studies have begun to explore the possibility of identifying identical DNA segments shared between historical and living people. This research requires access to large genetic datasets to maximize the likelihood of identifying previously unknown, close genetic connections. Direct-to-consumer genetic testing companies, such as 23andMe, Inc., manage by far the largest and most diverse genetic databases that can be used for this purpose. It is therefore important to think carefully about guidelines for carrying out collaborations between researchers and such companies. Such collaborations require consideration of ethical issues, including policies for sharing ancient DNA datasets, and ensuring reproducibility of research findings when access to privately controlled genetic datasets is limited. At the same time, they introduce unique possibilities for returning results to the research participants whose data are analyzed, including those who are identified as close genetic relatives of historical individuals, thereby enabling ancient DNA research to contribute to the restoration of information about ancestral connections that were lost over time, which can be particularly meaningful for families and groups where such history has not been well documented. We explore these issues by describing our experience designing and carrying out a study searching for genetic connections between 18th- and 19th-century enslaved and free African Americans who labored at Catoctin Furnace, Maryland, and 23andMe research participants. We share our experience in the hope of helping future researchers navigate similar ethical considerations, recognizing that our perspective is part of a larger conversation about best ethical practices.

PMID:37541241 | PMC:PMC10502734 | DOI:10.1016/j.ajhg.2023.06.011

Cultural Implications Regarding Privacy in Digital Contact Tracing Algorithms: Method Development and Empirical Ethics Analysis of a German and a Japanese Approach to Contact Tracing

Wed, 28 Jun 2023 00:00:00 +0000

J Med Internet Res. 2023 Jun 28;25:e45112. doi: 10.2196/45112.

ABSTRACT

BACKGROUND: Digital contact tracing algorithms (DCTAs) have emerged as a means of supporting pandemic containment strategies and protecting populations from the adverse effects of COVID-19. However, the impact of DCTAs on users' privacy and autonomy has been heavily debated. Although privacy is often viewed as the ability to control access to information, recent approaches consider it as a norm that structures social life. In this regard, cultural factors are crucial in evaluating the appropriateness of information flows in DCTAs. Hence, an important part of ethical evaluations of DCTAs is to develop an understanding of their information flow and their contextual situatedness to be able to adequately evaluate questions about privacy. However, only limited studies and conceptual approaches are currently available in this regard.

OBJECTIVE: This study aimed to develop a case study methodology to include contextual cultural factors in ethical analysis and present exemplary results of a subsequent analysis of 2 different DCTAs following this approach.

METHODS: We conducted a comparative qualitative case study of the algorithm of the Google Apple Exposure Notification Framework as exemplified in the German Corona Warn App and the Japanese approach of Computation of Infection Risk via Confidential Locational Entries (CIRCLE) method. The methodology was based on a postphenomenological perspective, combined with empirical investigations of the technological artifacts within their context of use. An ethics of disclosure approach was used to focus on the social ontologies created by the algorithms and highlight their connection to the question about privacy.

RESULTS: Both algorithms use the idea of representing a social encounter of 2 subjects. These subjects gain significance in terms of risk against the background of a representation of their temporal and spatial properties. However, the comparative analysis reveals 2 major differences. Google Apple Exposure Notification Framework prioritizes temporality over spatiality. In contrast, the representation of spatiality is reduced to distance without any direction or orientation. However, the CIRCLE framework prioritizes spatiality over temporality. These different concepts and prioritizations can be seen to align with important cultural differences in considering basic concepts such as subject, time, and space in Eastern and Western thought.

CONCLUSIONS: The differences noted in this study essentially lead to 2 different ethical questions about privacy that are raised against the respective backgrounds. These findings have important implications for the ethical evaluation of DCTAs, suggesting that a culture-sensitive assessment is required to ensure that technologies fit into their context and create less concern regarding their ethical acceptability. Methodologically, our study provides a basis for an intercultural approach to the ethics of disclosure, allowing for cross-cultural dialogue that can overcome mutual implicit biases and blind spots based on cultural differences.

PMID:37379062 | PMC:PMC10365635 | DOI:10.2196/45112

Children's Sexual Development and Privacy: A Call for Evidence-Based Ethical Policy

Thu, 22 Jun 2023 00:00:00 +0000

Clin Pediatr (Phila). 2023 Jun 21:99228231180998. doi: 10.1177/00099228231180998. Online ahead of print.

NO ABSTRACT

PMID:37345302 | DOI:10.1177/00099228231180998

Through the ethics of responsibility: privacy and the right to research.

Thu, 25 May 2023 00:00:00 +0000

Recenti Prog Med. 2023 Jun;114(6):329-331. doi: 10.1701/4042.40223.

ABSTRACT

The conduct of prospective studies on large numbers and with the support of banks of biological samples has been strongly influenced by the increasingly restrictive evolution of laws and regulations enacted to protect the privacy of study participants, often with significant repercussions in terms of delayed achievement of results and increased consumption of human and financial resources. A brief summary of the effects of this evolution on Italian studies in recent decades is reported, along with a reflection on possible solutions.

PMID:37229677 | DOI:10.1701/4042.40223

Translational Bioethics and Health Privacy

Thu, 11 May 2023 00:00:00 +0000

Ethics Hum Res. 2023 May-Jun;45(3):40-44. doi: 10.1002/eahr.500167.

ABSTRACT

Translational bioethics expands the scope of research ethics to include multidisciplinary analyses of the societal implications of new translational science discoveries. Novel health privacy issues are raised by the collection, use, and disclosure of extensive and diverse big data for research on precision medicine. Similar privacy concerns surround the use of artificial intelligence to analyze vast troves of clinical records to improve patient outcomes. Embedding bioethics scholars with translational scientists can improve the technical analyses and timeliness of bioethical inquiries, but they complicate the task of producing independent and rigorous ethical assessments.

PMID:37167473 | DOI:10.1002/eahr.500167

Reflections on the use of patient records: Privacy, ethics, and reparations in the history of psychiatry

Sat, 29 Apr 2023 00:00:00 +0000

J Hist Behav Sci. 2024 Jan;60(1):e22260. doi: 10.1002/jhbs.22260. Epub 2023 Apr 29.

ABSTRACT

One of the most common questions we get asked as historians of psychiatry is "do you have access to patient records?" Why are people so fascinated with the psychiatric patient record? Do people assume they are or should be available? Does access to the patient record actually tell us anything new about the history of psychiatry? And if we did have them, what can, or should we do with them? In the push to both decolonize and personalize the history of psychiatry, as well as make some kind of account or reparation for past mistakes, how can we proceed in an ethical manner that respects the privacy of people in the past who never imagined their intensely personal psychiatric encounter as subject for future historians? In this paper, we want to think through some of the issues that we deal with as white historians of psychiatry especially at the intersection of privacy, ethics, and racism. We present our thoughts as a conversation, structured around questions we have posed for ourselves, and building on discussions we have had together over the past few years. We hope that they act as a catalyst for further discussion in the field.

PMID:37119429 | DOI:10.1002/jhbs.22260

Ensuring privacy in telemedicine: Ethical and clinical challenges.

Sat, 01 Apr 2023 04:00:00 +0000

Journal of Telemedicine & Telecare; 04/01/2023
(AN 162417945); ISSN: 1357633X
CINAHL Complete

Assessment of App Store Description and Privacy Policy to Explore Ethical and Safety Concerns Associated with the Use of Mental Health Apps for Depression

Fri, 17 Mar 2023 00:00:00 +0000

Indian J Psychol Med. 2023 Mar;45(2):173-178. doi: 10.1177/02537176221142046. Epub 2023 Jan 14.

ABSTRACT

BACKGROUND: Mental Health apps (MH apps) could help address the huge unmet mental health care need of developing countries. This study aimed to explore potential ethical, data safety, and privacy issues associated with using MH apps for depression.

METHODS: A cross-sectional assessment of the top 50 MH apps (by Google Play store search result ordering) for depression available in India was conducted in November 2021.

RESULTS: Most apps were listed under the category of health and fitness (54%). The median number of total and dangerous permissions requested at the time of download was nine and three, respectively. Privacy policy in English was available for 76%. The average length of the privacy policy was 2171 words, and the mean Flesch-Kincaid reading grade level was 12 (much higher than the recommended cut-off of eight). Important features relevant to safeguarding consumer confidentiality, including names of third parties with which user data could be shared (42%), explicit consent before sharing data with third parties (16%), and assurance regarding the collection of de-identifiable data (11%), were missing from the majority of privacy policies.

CONCLUSION: There is an urgent need to improve the accessibility and usability of privacy policies by app developers, with the active involvement of other stakeholders.

PMID:36925500 | PMC:PMC10011839 | DOI:10.1177/02537176221142046

Book Review: Ethically Challenged: Private Equity Storms US Health Care , by Laura Katz Olson.

Wed, 01 Mar 2023 05:00:00 +0000

ILR Review; 03/01/2023
(AN 161786505); ISSN: 00197939
Health Business Elite

Ethical Dilemmas and Privacy Issues in Emerging Technologies: A Review

Sat, 11 Feb 2023 00:00:00 +0000

Sensors (Basel). 2023 Jan 19;23(3):1151. doi: 10.3390/s23031151.

ABSTRACT

Industry 5.0 is projected to be an exemplary improvement in digital transformation allowing for mass customization and production efficiencies using emerging technologies such as universal machines, autonomous and self-driving robots, self-healing networks, cloud data analytics, etc., to supersede the limitations of Industry 4.0. To successfully pave the way for acceptance of these technologies, we must be bound and adhere to ethical and regulatory standards. Presently, with ethical standards still under development, and each region following a different set of standards and policies, the complexity of being compliant increases. Having vague and inconsistent ethical guidelines leaves potential gray areas leading to privacy, ethical, and data breaches that must be resolved. This paper examines the ethical dimensions and dilemmas associated with emerging technologies and provides potential methods to mitigate their legal/regulatory issues.

PMID:36772190 | PMC:PMC9921682 | DOI:10.3390/s23031151

Patients with severe mental illness and the ethical challenges related to confidentiality during family involvement: A scoping review

Mon, 30 Jan 2023 00:00:00 +0000

Front Public Health. 2023 Jan 12;10:960815. doi: 10.3389/fpubh.2022.960815. eCollection 2022.

ABSTRACT

BACKGROUND: Despite evidence on the significant potential value of family involvement during the treatment of patients with severe mental illness, research has shown that family involvement is largely underused. The duty of confidentiality is reported to be a key barrier to family involvement. To develop more insight into this barrier, this scoping review focuses on the following question: What are the reported ethical challenges related to confidentiality when involving family in the treatment of patients with severe mental illness?

METHODS: A systematic search into primary studies was conducted using the following databases: Medline (Ovid), PsycINFO (Ovid), CINAHL (EBSCO), and Web of Science core collection (Clarivate). The PICO (Population, Intervention, Comparison, Outcome) scheme and qualitative content analysis were used to make the ethical challenges more explicit.

RESULTS: Twelve studies-both qualitative and quantitative-were included. We identified the following main categories of ethical challenges: (1) the best interest of family members vs. confidentiality, (2) the patient's best interest vs. the right to confidentiality, (3) patient trust and alliance as a reason not to involve the relatives or not to share information, and (4) using confidentiality as a smokescreen. We also identified several subcategories and illustrative and concrete examples of ethical challenges.

CONCLUSIONS: Through a systematic examination, we discovered various types of ethical challenges related to confidentiality when involving the family in the treatment of patients with severe mental illness. However, research on these ethical challenges and the constituents of these challenges remains limited and often implicit. An ethical analysis will create knowledge which may facilitate a more balanced and nuanced approach to respecting the principle of confidentiality while also considering other moral principles. The duty of confidentiality does not always have to be a major barrier to family involvement; this insight and using this ethical analysis in the training of healthcare professionals may benefit the patient, the family, and the services.

PMID:36711422 | PMC:PMC9877517 | DOI:10.3389/fpubh.2022.960815

Testing for selection bias and moral hazard in private health insurance: Evidence from a mixed public‐private health system.

Sun, 01 Jan 2023 05:00:00 +0000

Health Economics; 01/01/2023
(AN 160530379); ISSN: 10579230
CINAHL Complete

The duty of confidentiality during family involvement: ethical challenges and possible solutions in the treatment of persons with psychotic disorders

Tue, 20 Dec 2022 00:00:00 +0000

BMC Psychiatry. 2022 Dec 20;22(1):812. doi: 10.1186/s12888-022-04461-6.

ABSTRACT

BACKGROUND: Family involvement during severe mental illness is still poorly implemented, contrary to evidence-based recommendations. Confidentiality issues are among the most prominent barriers, with mental health professionals facing complex ethical, legal, and practical challenges. However, research focusing on this barrier is very sparse. Nested within a cluster-randomised trial to implement guidelines on family involvement for persons with psychotic disorders in community mental health centres, the aim of this sub-study was to explore ethical challenges related to the duty of confidentiality as experienced by mental health professionals, and to explore key measures that might contribute to improving the handling of such challenges.

METHODS: In total 75 participants participated in 21 semi-structured focus groups, including implementation team members at the initial and late phase of the intervention period and clinicians who were not on the implementation teams, at late phase of implementation. We used purposive sampling and manifest content analysis to explore participants' experiences and change processes.

RESULTS: Ethical challenges related to the duty of confidentiality included 1) Uncertainty in how to apply the legislation, 2) Patient autonomy versus a less strict interpretation of the duty of confidentiality, 3) Patient alliance and beneficence versus a less strict interpretation of the duty of confidentiality, 4) How to deal with uncertainty regarding what relatives know about the patients' illness, and 5) Relatives' interests versus the duty of confidentiality. Measures to facilitate better handling of the duty of confidentiality included 1) Training and practice in family involvement, and 2) Standardisation of family involvement practices.

CONCLUSION: When health professionals gained competence in and positive experiences with family involvement, this led to vital changes in how they interpreted and practiced the duty of confidentiality in their ethical reasoning and in clinical practice. Especially, the need to provide sufficient information to the patients about family involvement became evident during the study. To improve the handling of confidentiality issues, professionals should receive training in family involvement and confidentiality statutes followed by practice. Furthermore, family involvement should be standardised, and confidentiality guidelines should be implemented in the mental health services.

TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03869177. Registered 11.03.19.

PMID:36539741 | PMC:PMC9764492 | DOI:10.1186/s12888-022-04461-6

Response to Open Peer Commentaries on "Privacy and Health Practices in the Digital Age"...Mittelstadt B. Protecting Health Privacy through Reasonable Inferences. American Journal of Bioethics. 2022;22(7):65–68.

Thu, 01 Dec 2022 05:00:00 +0000

American Journal of Bioethics; 12/01/2022
(AN 160403033); ISSN: 15265161
CINAHL Complete

Health data privacy through homomorphic encryption and distributed ledger computing: an ethical-legal qualitative expert assessment study.

Thu, 01 Dec 2022 05:00:00 +0000

BMC Medical Ethics; 12/01/2022
(AN 160503796); ISSN: 14726939
CINAHL Complete

Health data privacy through homomorphic encryption and distributed ledger computing: an ethical-legal qualitative expert assessment study

Thu, 01 Dec 2022 00:00:00 +0000

BMC Med Ethics. 2022 Dec 1;23(1):121. doi: 10.1186/s12910-022-00852-2.

ABSTRACT

BACKGROUND: Increasingly, hospitals and research institutes are developing technical solutions for sharing patient data in a privacy preserving manner. Two of these technical solutions are homomorphic encryption and distributed ledger technology. Homomorphic encryption allows computations to be performed on data without this data ever being decrypted. Therefore, homomorphic encryption represents a potential solution for conducting feasibility studies on cohorts of sensitive patient data stored in distributed locations. Distributed ledger technology provides a permanent record on all transfers and processing of patient data, allowing data custodians to audit access. A significant portion of the current literature has examined how these technologies might comply with data protection and research ethics frameworks. In the Swiss context, these instruments include the Federal Act on Data Protection and the Human Research Act. There are also institutional frameworks that govern the processing of health related and genetic data at different universities and hospitals. Given Switzerland's geographical proximity to European Union (EU) member states, the General Data Protection Regulation (GDPR) may impose additional obligations.

METHODS: To conduct this assessment, we carried out a series of qualitative interviews with key stakeholders at Swiss hospitals and research institutions. These included legal and clinical data management staff, as well as clinical and research ethics experts. These interviews were carried out with two series of vignettes that focused on data discovery using homomorphic encryption and data erasure from a distributed ledger platform.

RESULTS: For our first set of vignettes, interviewees were prepared to allow data discovery requests if patients had provided general consent or ethics committee approval, depending on the types of data made available. Our interviewees highlighted the importance of protecting against the risk of reidentification given different types of data. For our second set, there was disagreement amongst interviewees on whether they would delete patient data locally, or delete data linked to a ledger with cryptographic hashes. Our interviewees were also willing to delete data locally or on the ledger, subject to local legislation.

CONCLUSION: Our findings can help guide the deployment of these technologies, as well as determine ethics and legal requirements for such technologies.

PMID:36451210 | PMC:PMC9713155 | DOI:10.1186/s12910-022-00852-2

In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology

Thu, 10 Nov 2022 00:00:00 +0000

Epidemics. 2022 Dec;41:100652. doi: 10.1016/j.epidem.2022.100652. Epub 2022 Nov 4.

ABSTRACT

The COVID-19 pandemic witnessed a surge in the use of health data to combat the public health threat. As a result, the use of digital technologies for epidemic surveillance showed great potential to collect vast volumes of data, and thereby respond more effectively to the healthcare challenges. However, the deployment of these technologies raised legitimate concerns over risks to individual privacy. While the ethical and governance debate focused primarily on these concerns, other relevant issues remained in the shadows. Leveraging examples from the COVID-19 pandemic, this perspective article aims to investigate these overlooked issues and their ethical implications. Accordingly, we explore the problem of the digital divide, the role played by tech companies in the public health domain and their power dynamics with the government and public research sector, and the re-use of personal data, especially in the absence of adequate public involvement. Even if individual privacy is ensured, failure to properly engage with these other issues will result in digital epidemiology tools that undermine equity, fairness, public trust, just distribution of benefits, autonomy, and minimization of group harm. On the contrary, a better understanding of these issues, a broader ethical and data governance approach, and meaningful public engagement will encourage adoption of these technologies and the use of personal data for public health research, thus increasing their power to tackle epidemics.

PMID:36356477 | PMC:PMC9635223 | DOI:10.1016/j.epidem.2022.100652

Ensuring privacy in telemedicine: Ethical and clinical challenges

Wed, 09 Nov 2022 00:00:00 +0000

J Telemed Telecare. 2023 Apr;29(3):217-221. doi: 10.1177/1357633X221134952. Epub 2022 Nov 8.

ABSTRACT

Data privacy in telemedicine has been extensively considered and reviewed in the literature, such as explorations of consent, who can access information, and the security of electronic systems. However, privacy breaches are also a potential concern in the physical setting and surroundings of the patient. Here we review clinical situations in which there is unanticipated loss of privacy, as well as potential physical and psychological safety concerns for the patient and others when privacy is limited. We identify ethical concerns and explore the challenges of supporting full true autonomous decision-making in this situation. We close with preliminary recommendations at the patient, clinician, and systems levels to help ensure privacy is maintained.

PMID:36349356 | DOI:10.1177/1357633X221134952

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$ over Ethics: Higher Education and the Private Prions Industry, a Symptom of the Theology of Neoliberalism

Wed, 05 Oct 2022 00:00:00 +0000

Crit Criminol. 2022;30(3):557-574. doi: 10.1007/s10612-022-09663-8. Epub 2022 Sep 29.

ABSTRACT

Neoliberalism's impact on our everyday lives, culture, and institutions is powerful and ubiquitous. One might suspect that higher education, especially non-profit colleges and universities, would be less affected and more resistant to the expansion of market-driven logic and the hyper-capitalist ethos of neoliberalism, but much evidence points to college and university subscription to the tenants of this ideology and practice. This is especially the case as state policy leaders, particularly conservative and neoconservative Republicans, are aggressively disinvesting in higher education, reducing or removing completely governmental responsibility to ensure an educated population in favor of market-driven forces. While we provide a brief overview of the corporatized universities of today and its problematic nature, we focus on the impact of corporate donations on universities, with particular attention to the private prison industry's intertwinement with higher education, and specifically the relationship between the GEO Group and Florida Atlantic University.

PMID:36196078 | PMC:PMC9522448 | DOI:10.1007/s10612-022-09663-8

Wastewater monitoring is the 'public health dream' that helped fight COVID. But it also raises big ethical questions about privacy and consent.

Mon, 03 Oct 2022 04:00:00 +0000

Fortune.com; 10/03/2022
(AN 159477074)
Health Business Elite

Testing for selection bias and moral hazard in private health insurance: Evidence from a mixed public-private health system

Wed, 14 Sep 2022 00:00:00 +0000

Health Econ. 2023 Jan;32(1):3-24. doi: 10.1002/hec.4605. Epub 2022 Sep 13.

ABSTRACT

Separating selection bias from moral hazard in private health insurance (PHI) markets has been a challenging task. We estimate selection bias and moral hazard in Australia's mixed public-private health system, where PHI premiums are community-rated rather than risk-rated. Using longitudinal cohort data, with fine-grained measures for medical services predominantly funded by PHI providers, we find consistent and robust estimates of advantageous selection among hospitalized cardiovascular disease (CVD) patients. Specifically, we show that in addition to their risk-averse attributes, CVD patients who purchase PHI use fewer services that are not covered by PHI providers (e.g., general practitioners and emergency departments) and have fewer comorbidities. Finally, unlike previous studies, we show that ex-post moral hazard exists in the use of specific "in-hospital" medical services such as specialist and physician services, miscellaneous diagnostic procedures, and therapeutic treatments. From the perspective of PHI providers, the annual cost of moral hazard translates to a lower bound estimate of $707 per patient, equivalent to a 3.03% reduction in their annual profits.

PMID:36100982 | PMC:PMC10087718 | DOI:10.1002/hec.4605

Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research

Wed, 03 Aug 2022 00:00:00 +0000

Sci Eng Ethics. 2022 Aug 3;28(4):32. doi: 10.1007/s11948-022-00387-0.

ABSTRACT

In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health research, its intrinsic value is grounded in respect for the dignity of the post-mortem informational entity. However, existing guidance on post-mortem data protection is available only in the context of genetic studies. In comparing the characteristics of genetic data and other health-related data, we identify two features of DNA often given as arguments for this genetic exceptionalism: relationality and embodiment. We use these concepts to show that at the appropriate Level of Abstraction, there is no morally relevant distinction between posthumous genetic and other health data. Thus, genetic data should not automatically receive special moral status after death. Instead we make a plea for 'contextual exceptionalism'. Our analysis concludes by reflecting on a real-world case and providing suggestions for contextual factors that researchers and oversight bodies should take into account when designing and evaluating research projects with health data from deceased subjects.

PMID:35922650 | PMC:PMC9349167 | DOI:10.1007/s11948-022-00387-0

Medical Confidentiality Ethics: The Genesis of an Islamic Juristic Perspective.

Mon, 01 Aug 2022 04:00:00 +0000

Journal of Religion & Health; 08/01/2022
The Sharīʿah affords considerable concern for human emotions, with its rulings seeking to remove the deliberate and accidental types of harm that may be inflicted on individuals or society. The principle of medical confidentiality protects patients' dignity and avoids potential harm if otherwise practised. Texts from the Quran and Sunnah substantiate that unjustified disclosure of secrets is prohibited and whoever breaches confidentiality is to be punished. This paper explores the origins of Islamic ethical framework vis-à-vis dealing with privacy, particularly confidential information acquired by health professionals. For that, this paper attempts to explore various āyāt (Quranic verses) and aḥādīth (Prophetic traditions) related to privacy, and thus to analogically deduct various aspects of confidentiality in the context of medical ethics. As a result, it aims to discourse on key principles of medical confidentiality from an Islamic juristic perspective, discussing its types and conditions.
(AN 158162956); ISSN: 00224197
CINAHL Complete

Malpractice Claims and Ethical Issues in Prison Health Care Related to Consent and Confidentiality

Wed, 27 Jul 2022 00:00:00 +0000

Healthcare (Basel). 2022 Jul 12;10(7):1290. doi: 10.3390/healthcare10071290.

ABSTRACT

Respecting the consent and confidentiality of a patient is an underlying element in establishing the patient's trust in the physician and, implicitly, obtaining the patient's compliance. In particular, cases of inmate patients require increased attention in order to fulfill this goal against a background of institutional interferences, which, in certain situations, may endanger the autonomy of the physician and their respect for the inmate's dignity. The purpose of this article is to depict the characteristics of consent and confidentiality in a prison environment, in special cases, such as hunger strikes, violent acts, HIV testing, COVID-19 measures, and drug use, bringing into focus the physician and the inmate in the context of the particular situation where the target is disciplining someone in order for them to conform to social and juridical norms. Respecting the dignity of the inmate patient requires an adequate approach of informed consent and confidentiality, depending on each case, considering the potential unspoken aspects of the inmate's account, which can be key elements in obtaining their compliance and avoiding malpractice claims.

PMID:35885817 | PMC:PMC9324339 | DOI:10.3390/healthcare10071290

The Impossibility of a Moral Right to Privacy

Tue, 05 Jul 2022 00:00:00 +0000

Neuroethics. 2022;15(2):23. doi: 10.1007/s12152-022-09500-3. Epub 2022 Jun 28.

ABSTRACT

This paper clarifies and defends against criticism our argument in Unfit for the Future that there is no moral right to privacy. A right to privacy is conceived as a right that others do not acquire information about us that we reserve for ourselves and selected others. Information acquisition itself is distinguished from the means used to acquire it and the uses to which the information is put. To acquire information is not an action; it is to be caused to be in an internal state. By contrast, means of acquisition and uses of information are actions that can be voluntarily controlled. We can therefore have rights against others that they stay away from certain means and uses but not from information acquisition in itself. An omniscient, omnipotent and omnibeneficient being is not thought to violate a right to privacy because its means and uses of information are morally acceptable.

PMID:35784396 | PMC:PMC9239928 | DOI:10.1007/s12152-022-09500-3

Malpractice Claims and Ethical Issues in Prison Health Care Related to Consent and Confidentiality.

Fri, 01 Jul 2022 04:00:00 +0000

Healthcare (2227-9032); 07/01/2022
(AN 158241251); ISSN: 22279032
CINAHL Complete

Health data protection and confidentiality in EU BTC legislation: ethical and safety standards

Wed, 08 Jun 2022 00:00:00 +0000

Rom J Morphol Embryol. 2021 Oct-Dec;62(4):1063-1067. doi: 10.47162/RJME.62.4.20.

ABSTRACT

PURPOSE: The current paper focuses on the ethical approaches to data protection and confidentiality (DP&C) and the quality and safety (Q&S) requirements in the European Union (EU) blood, tissues and cells (BTC) legislation, namely: Directive 2002∕98∕EC, Directive 2004∕23∕EC, Directive 2005∕61∕EC, Directive 2005∕62∕EC, Directive 2006∕86∕EC, Commission Directive (EU) 2015∕565, SWD(2019) 376 final and the external evaluation SANTE∕2017∕B4∕010.

BACKGROUND: In the EU, the ethical requirements for the BTC legal framework focus also on the quality, eligibility, safety, and protection standards. In addition, the SWD(2019) 376 final on the evaluation of the EU BTC legislation released in October 2019 draws attention to the challenges of technology, consent and donation, testing procedures and management of the BTC services.

CONTENT: The paper highlights the EU BTC setting standards by examining the particular provisions for the: hemovigilance, eligibility of donors, blood and blood components (BBC), consent, decisions required at the Member States (MS) level, healthcare standards, measures for the blood establishments (BE) and tissue establishments (TE) and particular issues concerning the donation of tissues and/or cells (T&C).

CONCLUSIONS: Nevertheless, the intended function of the analysis is to focus on the EU BTC legislation and to enable research responsive to the latest initiatives launched by the European Blood Alliance (EBA) and Nuffield Council on Bioethics (NCB) in the field of the definitions and ethical processes.

PMID:35673827 | PMC:PMC9289719 | DOI:10.47162/RJME.62.4.20

Profiling, Privacy, and Protection: Ethical Guidance When Police Are Present at Bedside.

Wed, 01 Jun 2022 04:00:00 +0000

Annals of the American Thoracic Society; 06/01/2022
The article looks at the inherent tensions between the ethical priorities of law enforcement and health care. it mentions that law enforcement officials (LEOs) commit to serve the community, whereas healthcare professionals (HCPs) commit to serving individual patients. It informs that health professionals might feel obligated to report incidents of suspected police use of excessive force, as advocates for their patients.
(AN 157267029); ISSN: 23296933
CINAHL Complete