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2.
Br J Dermatol ; 190(6): 789-797, 2024 May 17.
Artículo en Inglés | MEDLINE | ID: mdl-38330217

RESUMEN

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.


The use of artificial intelligence (AI) in dermatology is rapidly increasing, with applications in dermatopathology, medical dermatology, cutaneous surgery, microscopy/spectroscopy and the identification of prognostic biomarkers (characteristics that provide information on likely patient health outcomes). However, with the rise of AI in dermatology, ethical concerns have emerged. We reviewed the existing literature to identify applications of AI in the field of dermatology and understand the ethical implications. Our search initially identified 202 papers, and after we went through them (screening), 68 were included in our review. We found that ethical concerns are related to the use of AI in the areas of clinical image analysis, teledermatology, natural language processing models, privacy, skin of colour representation, and patient and provider attitudes toward AI. We identified nine ethical principles to facilitate the safe use of AI in dermatology. These ethical principles include fairness, inclusivity, transparency, accountability, security, privacy, reliability, informed consent and conflict of interest. Although there are many benefits of integrating AI into clinical practice, our findings highlight how safeguards must be put in place to reduce rising ethical concerns.


Asunto(s)
Inteligencia Artificial , Dermatología , Humanos , Inteligencia Artificial/ética , Dermatología/ética , Dermatología/métodos , Telemedicina/ética , Consentimiento Informado/ética , Confidencialidad/ética , Errores Diagnósticos/ética , Errores Diagnósticos/prevención & control , Seguridad Computacional/ética , Enfermedades de la Piel/diagnóstico , Enfermedades de la Piel/terapia , Aplicaciones Móviles/ética
3.
Am J Ther ; 31(4): e388-e397, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38662923

RESUMEN

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.


Asunto(s)
Inteligencia Artificial , Confidencialidad , Consentimiento Informado , Humanos , Inteligencia Artificial/ética , Confidencialidad/ética , Consentimiento Informado/ética , Ética Médica , Seguridad Computacional/ética
4.
Eur J Pediatr ; 183(5): 2477-2490, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38478133

RESUMEN

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.


Asunto(s)
Bancos de Muestras Biológicas , Investigación Biomédica , Humanos , Bancos de Muestras Biológicas/ética , Bancos de Muestras Biológicas/legislación & jurisprudencia , Niño , Investigación Biomédica/ética , Pediatría/ética , Consentimiento Informado/legislación & jurisprudencia , Guías como Asunto , Familia , Confidencialidad/ética
5.
BMC Med Ethics ; 25(1): 49, 2024 May 03.
Artículo en Inglés | MEDLINE | ID: mdl-38702729

RESUMEN

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.


Asunto(s)
Confidencialidad , Consultoría Ética , Principios Morales , Confidencialidad/ética , Humanos , Ética Clínica , Empatía
6.
BMC Med Ethics ; 25(1): 55, 2024 May 16.
Artículo en Inglés | MEDLINE | ID: mdl-38750441

RESUMEN

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.


Asunto(s)
Inteligencia Artificial , Humanos , Estudios Transversales , Femenino , Masculino , Adulto , Inteligencia Artificial/ética , Medio Oriente , Encuestas y Cuestionarios , África del Norte , Consentimiento Informado/ética , Confidencialidad/ética , Persona de Mediana Edad , Beneficencia , Farmacéuticos/ética , Seguridad Computacional , Adulto Joven , Actitud del Personal de Salud , Justicia Social , Privacidad
7.
J Med Internet Res ; 26: e50204, 2024 May 13.
Artículo en Inglés | MEDLINE | ID: mdl-38739913

RESUMEN

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.


Asunto(s)
Medicina de Precisión , Medicina de Precisión/métodos , Medicina de Precisión/tendencias , Humanos , Atención a la Salud/tendencias , Atención a la Salud/ética , Atención a la Salud/métodos , Consentimiento Informado/ética , Confidencialidad/ética
8.
J Clin Ethics ; 35(2): 85-92, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38728697

RESUMEN

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.


Asunto(s)
Confidencialidad , Padres , Humanos , Adolescente , Confidencialidad/legislación & jurisprudencia , Confidencialidad/ética , Masculino , Estados Unidos , Revelación/legislación & jurisprudencia , Revelación/ética , Autonomía Personal , Consentimiento Paterno/legislación & jurisprudencia , Consentimiento Paterno/ética , Derechos del Paciente/legislación & jurisprudencia , Niño , Privacidad/legislación & jurisprudencia , Registros Electrónicos de Salud/ética , Registros Electrónicos de Salud/legislación & jurisprudencia , Acceso a la Información/legislación & jurisprudencia , Acceso a la Información/ética
9.
Aten Primaria ; 56(7): 102901, 2024 Jul.
Artículo en Español | MEDLINE | ID: mdl-38452658

RESUMEN

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.


Asunto(s)
Inteligencia Artificial , Telemedicina , Telemedicina/ética , Humanos , Inteligencia Artificial/ética , Discusiones Bioéticas , Bioética , Confidencialidad/ética , Aplicaciones Móviles/ética , Tecnología Digital/ética , Internet de las Cosas/ética , Salud Digital
10.
Cas Lek Cesk ; 163(3): 106-114, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38981731

RESUMEN

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.


Asunto(s)
Telemedicina , Telemedicina/ética , Humanos , Derechos del Paciente/ética , Confidencialidad/ética , Seguridad Computacional/ética , Relaciones Médico-Paciente/ética
11.
Crit Care Med ; 49(6): e563-e577, 2021 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-33625129

RESUMEN

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.


Asunto(s)
Confidencialidad/normas , Bases de Datos Factuales/normas , Intercambio de Información en Salud/normas , Unidades de Cuidados Intensivos/organización & administración , Sociedades Médicas/normas , Confidencialidad/ética , Confidencialidad/legislación & jurisprudencia , Bases de Datos Factuales/ética , Bases de Datos Factuales/legislación & jurisprudencia , Intercambio de Información en Salud/ética , Intercambio de Información en Salud/legislación & jurisprudencia , Health Insurance Portability and Accountability Act , Hospitales Universitarios/ética , Hospitales Universitarios/legislación & jurisprudencia , Hospitales Universitarios/normas , Humanos , Unidades de Cuidados Intensivos/normas , Países Bajos , Estados Unidos
16.
Sci Eng Ethics ; 27(2): 23, 2021 03 29.
Artículo en Inglés | MEDLINE | ID: mdl-33779818

RESUMEN

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.


Asunto(s)
Confidencialidad/ética , Trazado de Contacto/ética , Trazado de Contacto/métodos , Tecnología Digital , Almacenamiento y Recuperación de la Información/métodos , Aplicaciones Móviles , Privacidad , COVID-19/epidemiología , Política de Salud , Humanos , Almacenamiento y Recuperación de la Información/ética , Salud Pública , SARS-CoV-2 , Teléfono Inteligente
17.
Med Princ Pract ; 30(1): 17-28, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-32498071

RESUMEN

An overview of ethics and clinical ethics is presented in this review. The 4 main ethical principles, that is beneficence, nonmaleficence, autonomy, and justice, are defined and explained. Informed consent, truth-telling, and confidentiality spring from the principle of autonomy, and each of them is discussed. In patient care situations, not infrequently, there are conflicts between ethical principles (especially between beneficence and autonomy). A four-pronged systematic approach to ethical problem-solving and several illustrative cases of conflicts are presented. Comments following the cases highlight the ethical principles involved and clarify the resolution of these conflicts. A model for patient care, with caring as its central element, that integrates ethical aspects (intertwined with professionalism) with clinical and technical expertise desired of a physician is illustrated.


Asunto(s)
Beneficencia , Ética Clínica , Atención Dirigida al Paciente/ética , Autonomía Personal , Justicia Social , Confidencialidad/ética , Humanos , Consentimiento Informado/ética , Principios Morales , Negociación , Solución de Problemas , Revelación de la Verdad/ética
18.
J Infect Dis ; 222(12): 1997-2006, 2020 11 13.
Artículo en Inglés | MEDLINE | ID: mdl-32525980

RESUMEN

In recent years, phylogenetic analysis of HIV sequence data has been used in research studies to investigate transmission patterns between individuals and groups, including analysis of data from HIV prevention clinical trials, in molecular epidemiology, and in public health surveillance programs. Phylogenetic analysis can provide valuable information to inform HIV prevention efforts, but it also has risks, including stigma and marginalization of groups, or potential identification of HIV transmission between individuals. In response to these concerns, an interdisciplinary working group was assembled to address ethical challenges in US-based HIV phylogenetic research. The working group developed recommendations regarding (1) study design; (2) data security, access, and sharing; (3) legal issues; (4) community engagement; and (5) communication and dissemination. The working group also identified areas for future research and scholarship to promote ethical conduct of HIV phylogenetic research.


Asunto(s)
Investigación Biomédica/ética , Infecciones por VIH/prevención & control , VIH/genética , Filogenia , Comités Consultivos , Participación de la Comunidad , Seguridad Computacional/normas , Confidencialidad/ética , Confidencialidad/legislación & jurisprudencia , Infecciones por VIH/transmisión , Humanos , Difusión de la Información/ética , Difusión de la Información/legislación & jurisprudencia , National Institutes of Health (U.S.) , Vigilancia en Salud Pública , Proyectos de Investigación , Estados Unidos/epidemiología
19.
Gac Med Mex ; 157(1): 90-93, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34125817

RESUMEN

In retrolective research, the information necessary to answer the research question is directly generated from medical records and other clinical-documentary sources. This article analyzes the waiver of informed consent and privacy notice when research is retrolective, from which two lines of argument emerge: one is the physician's duty to protect patient dignity, integrity, right to self-determination and privacy, as well as the confidentiality of the information obtained from him; the other is retrolective research contribution to the control of diseases and society's health improvement. Waiver of informed consent or privacy notice documented in the medical record is important for retrolective research, but it has ethical implications for researchers who do not comply with the rationality and personal responsibility they have before society.


En la investigación retrolectiva, la información necesaria para responder la pregunta de investigación se genera directamente de expedientes clínicos y de otras fuentes clínico-documentales. Este artículo analiza la dispensa del consentimiento informado y el aviso de privacidad cuando la investigación es retrolectiva, de lo cual emergen dos líneas de argumentación: una es el deber del médico de proteger la dignidad, la integridad, el derecho a la autodeterminación, la intimidad del enfermo y la confidencialidad de la información obtenida de él; la otra es la contribución de las investigaciones retrolectivas al control de las enfermedades y a la mejora de la salud de la sociedad. La dispensa del consentimiento o el aviso de privacidad en el expediente clínico es importante para la investigación retrolectiva, pero tiene implicaciones éticas para los investigadores que no cumplan con la racionalidad y responsabilidad personal que tienen ante la sociedad.


Asunto(s)
Confidencialidad/ética , Comités de Ética en Investigación , Ética en Investigación , Registros de Salud Personal/ética , Consentimiento Informado/ética , Confidencialidad/legislación & jurisprudencia , Humanos , Consentimiento Informado/legislación & jurisprudencia , México , Autonomía Personal
20.
Reprod Biomed Online ; 41(6): 1144-1150, 2020 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-32967810

RESUMEN

RESEARCH QUESTION: What ethical implications, issues and concerns play a role in conducting follow-up studies of children born after assisted reproductive technologies (ART)? DESIGN: Literature study and relevant experiences of academic medical centres in Brussels, Belgium, and Maastricht, the Netherlands were used to identify and analyse the most pertinent ethical implications, issues and concerns. RESULTS: According to recommendations from the European Society of Human Reproduction and Embryology, follow-up (ideally long term) of children conceived through medically assisted reproduction (MAR) should be an integral part of introducing new ART. With potentially risky new ART on the horizon, these recommendations need to be taken more seriously. Apart from practical barriers, such as funding, challenges for follow-up include securing active involvement of families of children conceived through MAR, starting with parents of young children, and ideally involving consenting adolescents and adults during a large part of their lives, possibly even into the next generation. CONCLUSIONS: From an ethical viewpoint, the most pertinent issues include the proportionality of the inevitable burdens and risks for families of children conceived through MAR, and the implications of the principle of respect for autonomy. The proportionality requirement is most critical when it concerns incompetent children, who should not be included in research with more than minimal burdens and risks if there is no reasonable expectation of benefit for themselves. With respect for autonomy, we argue that, when seeking voluntary consent for participating in follow-up studies that meet the condition of proportionality, professionals may encourage members of families of children conceived through MAR to partake in follow-up research.


Asunto(s)
Desarrollo Infantil/fisiología , Monitoreo Fisiológico , Medicina Reproductiva/ética , Adulto , Bélgica , Investigación Biomédica/ética , Niño , Preescolar , Confidencialidad/ética , Femenino , Estudios de Seguimiento , Humanos , Lactante , Recién Nacido , Consentimiento Informado , Masculino , Monitoreo Fisiológico/ética , Países Bajos , Autonomía Personal , Embarazo , Medicina Reproductiva/métodos , Técnicas Reproductivas Asistidas/ética
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