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1.
Br J Dermatol ; 190(6): 789-797, 2024 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-38330217

RESUMO

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.


Assuntos
Inteligência Artificial , Dermatologia , Humanos , Inteligência Artificial/ética , Dermatologia/ética , Dermatologia/métodos , Telemedicina/ética , Consentimento Livre e Esclarecido/ética , Confidencialidade/ética , Erros de Diagnóstico/ética , Erros de Diagnóstico/prevenção & controle , Segurança Computacional/ética , Dermatopatias/diagnóstico , Dermatopatias/terapia , Aplicativos Móveis/ética
2.
Acta bioeth ; 27(1): 59-67, jun. 2021.
Artigo em Inglês | LILACS | ID: biblio-1383246

RESUMO

Abstract: Recent studies highlight the importance of digital surveillance to gather individual health information due to the global pandemic caused by the new COVID-19 disease. This paper analyses its legal and ethical implications at the interface between the individual right to privacy and the collective interests of public health. We framed the discussion in law, deontology and utilitarianism. The lasted theories and human rights, especially privacy, are crucial in our argument. Health-derived dilemmas and efforts to solve them, especially by information technologies, bioethics and law, exist at these perspectives' interface. In particular, we analysed the intersection between autonomy, the right to privacy, and the so-called 'right to be forgotten' in the public health context. In other words, we studied the right to obtain from the controller the erasure of health data - a radical means of control over personal data established in Article 17 of the General Data Protection Regulation (GDPR). Given the lack of specifics regarding collection and re-use of such data under the broad scope of public health purposes, implied consent does not address the issue of proportionality. We highlight legal safeguards' insufficiency, suggesting applying the 'right to be forgotten' according to an ethical interpretation.


Resumen: Estudios recientes destacan la importancia de la vigilancia digital para recoger información sanitaria individual debido a la pandemia mundial causada por la nueva enfermedad COVID-19. Este artículo analiza sus implicaciones legales y éticas en la interfaz entre el derecho individual a la privacidad y los intereses colectivos de la salud pública. Enmarcamos la discusión en el derecho, la deontología y el utilitarismo. Estas últimas teorías y los derechos humanos, especialmente la privacidad, son cruciales en nuestro argumento. Los dilemas relacionados con la salud y los esfuerzos por resolverlos, especialmente a través de la tecnología de la información, la bioética y el derecho, se encuentran en la interfaz de estas perspectivas. En particular, analizamos la intersección entre la autonomía, el derecho a la privacidad y el llamado "derecho al olvido" en el contexto de la salud pública. Es decir, estudiamos el derecho a obtener del responsable del tratamiento la supresión de los datos de salud, un medio radical de control sobre los datos personales establecido en el artículo 17 del Reglamento general de protección de datos (RGPD). Dada la falta de especificidades en cuanto a la recogida y reutilización de dichos datos dentro del amplio ámbito de los objetivos de salud pública, el consentimiento implícito no aborda la cuestión de la proporcionalidad. Destacamos la insuficiencia de las garantías legales, sugiriendo la aplicación del "derecho al olvido" según una interpretación ética.


Resumo: Estudos recentes salientam a importância da vigilância digital para recolher informações individuais de saúde devido à pandemia global causada pela nova doença COVID-19. Este artigo analisa as suas implicações legais e éticas na interface entre o direito individual à privacidade e os interesses coletivos da saúde pública. Enquadramos a discussão no direito, na deontologia e no utilitarismo. As últimas teorias e os direitos humanos, especialmente a privacidade, são cruciais na nossa argumentação. Dilemas derivados da saúde e esforços para os resolver, especialmente através das tecnologias da informação, da bioética e do direito, existem na interface destas perspetivas. Em particular, analisámos a intersecção entre autonomia, direito à privacidade, e o chamado "direito ao esquecimento" no contexto da saúde pública. Por outras palavras, estudámos o direito de obter do responsável pelo tratamento o apagamento dos dados de saúde, um meio radical de controlo dos dados pessoais estabelecido no artigo 17º do Regulamento Geral de Proteção de Dados (RGPD). Dada a falta de especificidades em relação à recolha e reutilização de tais dados no âmbito alargado dos objetivos de saúde pública, o consentimento implícito não aborda a questão da proporcionalidade. Destacamos a insuficiência de salvaguardas jurídicas, sugerindo a aplicação do "direito ao esquecimento" de acordo com uma interpretação ética.


Assuntos
Humanos , Revelação da Verdade/ética , Confidencialidade/ética , Privacidade , Direitos do Paciente , COVID-19 , Saúde Pública , Confidencialidade/legislação & jurisprudência , Pandemias
3.
Acta bioeth ; 27(1): 69-78, jun. 2021.
Artigo em Inglês | LILACS | ID: biblio-1383247

RESUMO

Abstract: 15. The anonymity of gamete donors in the context of medically-assisted reproduction techniques (ART) and the right of the offspring to know their genetic or biological parents' identity is a controversial and widely debated topic in the scientific literature. The positions on the issue in each country are different. Sometimes they are in opposition to each other even in countries with strong similarities, such as those in the European Union (EU), in the framework of shared ethical values. Although some countries still enshrine the rule of anonymity, there is an undeniable tendency to guarantee the right to know one's origins by creating relevant exceptions or abolishing donor anonymity status altogether. 16. This article offers ethical and legal considerations of whether the so-called 'right to be forgotten' (RTBF) could be extended to include gamete donors' right to remain anonymous. This perspective goes against the general trend, certainly in Europe, of recognizing that offspring born from donor gametes have a right to access information relating to their genetic progenitors. The novel addition is to question whether the General Data Protection Regulation (GDPR) might provide fertile ground for questioning this approach, and effectively support those jurisdictions where anonymity is still possible.


Resumen: 20. El anonimato de los donantes de gametos en el contexto de las técnicas de reproducción médicamente asistida (RM) y el derecho de la descendencia a conocer su identidad genética o biológica es un tema controvertido y ampliamente debatido en la literatura científica. Las posiciones sobre el tema en cada país son diferentes. A veces se oponen entre sí, incluso en países con fuertes similitudes, como los de la Unión Europea (UE), en el marco de valores éticos compartidos. Aunque algunos países siguen consagrando la norma del anonimato, es innegable la tendencia a garantizar el derecho a conocer el propio origen creando las excepciones pertinentes o suprimiendo por completo el estatus de anonimato del donante. 21. Este artículo ofrece consideraciones éticas y jurídicas sobre si el llamado "derecho al olvido" podría ampliarse para incluir el derecho de los donantes de gametos a permanecer en el anonimato. Esta opinión es contraria a la tendencia general, ciertamente en Europa, de reconocer que los hijos nacidos de gametos donados tienen derecho a acceder a la información relativa a sus padres genéticos. La nueva adición consiste en debatir si el Reglamento general de protección de datos (RGPD) podría proporcionar un terreno fértil para cuestionar este enfoque y apoyar efectivamente a las jurisdicciones en las que el anonimato sigue siendo posible.


Resumo 25. O anonimato dos dadores de gâmetas no contexto das técnicas de reprodução medicamente assistida (RMA) e o direito da descendência a conhecer a sua identidade genética ou biológica é um tema controverso e amplamente debatido na literatura científica. As posições sobre a questão em cada país são diferentes. Por vezes estão em oposição umas às outras, mesmo em países com fortes semelhanças, como os da União Europeia (UE), no quadro de valores éticos partilhados. Embora alguns países ainda consagrem a regra do anonimato, existe uma tendência inegável para garantir o direito de conhecer as suas origens, criando exceções relevantes ou abolindo completamente o estatuto de anonimato dos dadores. 26. Este artigo oferece considerações éticas e legais sobre se o chamado "direito ao esquecimento" poderia ser alargado para incluir o direito dos dadores de gâmetas a permanecerem anónimos. Esta perspetiva vai contra a tendência geral, certamente na Europa, de reconhecer que os descendentes nascidos de gâmetas doadas têm o direito de aceder à informação relacionada com os seus progenitores genéticos. O novo aditamento é debater se o Regulamento Geral de Proteção de Dados (RGPD) poderá fornecer um terreno fértil para questionar esta abordagem, e apoiar efetivamente as jurisdições onde o anonimato ainda é possível.


Assuntos
Humanos , Confidencialidade/ética , Direitos do Paciente , Doação Dirigida de Tecido/ética , Doadores de Tecidos , Confidencialidade/legislação & jurisprudência , Privacidade , Revelação/legislação & jurisprudência , Revelação/ética , Doação Dirigida de Tecido/legislação & jurisprudência , Células Germinativas
4.
Gac. méd. Méx ; 157(1): 94-98, ene.-feb. 2021.
Artigo em Espanhol | LILACS | ID: biblio-1279080

RESUMO

Resumen 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.


Abstract 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.


Assuntos
Humanos , Confidencialidade/ética , Comitês de Ética em Pesquisa , Ética em Pesquisa , Registros de Saúde Pessoal/ética , Consentimento Livre e Esclarecido/ética , Confidencialidade/legislação & jurisprudência , Autonomia Pessoal , Consentimento Livre e Esclarecido/legislação & jurisprudência , México
7.
Eur J Oncol Nurs ; 49: 101839, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33120221

RESUMO

PURPOSE: The Norwegian Health Personnel Act (HPA §10a) obliges health professionals to contribute to meeting minor children's need for information about their parents' illness and prognosis. Previous research has shown that many parents withhold information about illness and anticipated death from their children. This study explored main considerations for palliative health-care professionals in these situations, and how they negotiate conflicting considerations of confidentiality and child involvement. METHOD: This qualitative exploratory study involved semi-structured interviews with 11 palliative health-care professionals. Hermeneutics informed the data analysis. RESULTS: The health professionals' main considerations were sustaining patients' hope and building trust in the professional-patient relationship. Both concerns were grounded in respect for patient autonomy. The health professionals negotiated patient autonomy and child involvement in different ways, defined in the present analysis on a continuum ranging from granting full patient autonomy to going directly against patients' will. CONCLUSIONS: The professional-patient relationship is the primary consideration in the health care context, and decision making on the degree of children's involvement happens in a dialogical process between health professionals and patients. Close professional-patient relationships might increase the emotional impacts on health professionals, who consequently might give greater relative weight to patients' will. We propose that procedures for initiating collaboration with professionals in the child's everyday life context help health professionals involving the child without threatening trust.


Assuntos
Atitude Frente a Morte , Confidencialidade/ética , Confidencialidade/psicologia , Família/psicologia , Cuidados Paliativos/psicologia , Pais/psicologia , Preferência do Paciente/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Pessoal de Saúde/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Noruega , Relações Profissional-Família , Relações Profissional-Paciente , Pesquisa Qualitativa , Adulto Jovem
8.
J Infect Dis ; 222(12): 1997-2006, 2020 11 13.
Artigo em Inglês | MEDLINE | ID: mdl-32525980

RESUMO

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.


Assuntos
Pesquisa Biomédica/ética , Infecções por HIV/prevenção & controle , HIV/genética , Filogenia , Comitês Consultivos , Participação da Comunidade , Segurança Computacional/normas , Confidencialidade/ética , Confidencialidade/legislação & jurisprudência , Infecções por HIV/transmissão , Humanos , Disseminação de Informação/ética , Disseminação de Informação/legislação & jurisprudência , National Institutes of Health (U.S.) , Vigilância em Saúde Pública , Projetos de Pesquisa , Estados Unidos/epidemiologia
10.
Arch. argent. pediatr ; 118(2): S64-S68, abr. 2020.
Artigo em Espanhol | LILACS, BINACIS | ID: biblio-1100506

RESUMO

Desde los inicios de la medicina, la reproducción de imágenes de pacientes, ya sea con fines didácticos o de compartir experiencias, fue considerada una práctica habitual en el quehacer médico. La aparición de la fotografía facilitó y generalizó enormemente esta práctica dentro de los equipos de salud. Las imágenes de los pacientes requieren el mismo consentimiento y garantías de confidencialidad que otras partes del registro médico. Se remarca la importancia del consentimiento informado. Se considera la responsabilidad legal de estos actos.


From the beginning of medicine, the reproduction of patients' images, initially as drawings, either for didactic purposes or to share experiences, were common in medical practice. Photography greatly facilitated and generalized this practice within health teams. The images of the affected patients need the same consents and guarantees of confidentiality as any other parts of the medical record, so the importance of obtaining informed consent is highlighted. Beyond ethical aspects, professionals have to take into account the legal responsibility involved in carrying out this act.


Assuntos
Humanos , Fotografia , Consentimento Livre e Esclarecido/ética , Bioética , Confidencialidade/ética , Jurisprudência
11.
Rev. Hosp. Ital. B. Aires (2004) ; 40(1): 39-42, mar. 2020.
Artigo em Espanhol | LILACS | ID: biblio-1102378

RESUMO

Un equipo investigador liderado por el primer autor de este artículo propuso traducir al español, adaptar transculturalmente y validar un cuestionario para evaluar la competencia de quienes ejercen mentoría en investigación. Dado que no se trataba de una investigación clínica, en un principio, el equipo investigador le restó importancia a la deliberación ética, asumiendo que este tipo de investigación podría estar exceptuada de ser evaluada por un Comité Independiente de Ética. Sin embargo, luego de revisar la bibliografía especializada y de varias sesiones de discusión con expertos en ética de la investigación, la opinión del equipo fue cambiando. Este artículo pretende compartir esta experiencia deliberativa con todo equipo involucrado en investigaciones en educación. (AU)


A research team led by the first author of this article proposed to translate into Spanish, adapt cross-culturally and validate a questionnaire to assess the competence of those who do research mentoring. Since it was not a clinical investigation, initially, the research team downplayed ethical deliberation, assuming that this type of research could be exempted from being evaluated by an Independent Ethics Committee. However, after reviewing the specialized literature and several discussion sessions with experts in research ethics, the opinion of the team changed. This article aims to share this deliberative experience with any team involved in education research. (AU)


Assuntos
Humanos , Mentores/educação , Ética em Pesquisa/educação , Educação/ética , Valores Sociais , Traduções , Inquéritos e Questionários , Barreiras de Comunicação , Confidencialidade/ética , Fatores Culturais , Termos de Consentimento , Projetos , Comunicação e Divulgação Científica , Relatório de Pesquisa , Consentimento Livre e Esclarecido/ética
12.
BMJ Open ; 10(2): e033127, 2020 02 25.
Artigo em Inglês | MEDLINE | ID: mdl-32102811

RESUMO

OBJECTIVES: Disclosure of a hereditary condition in the family poses notable challenges for patients who often seek the assistance of genetic health professionals (GHPs). This study aimed to investigate GHPs' opinions about the ideal time for disclosure to offspring and their responsibility to at-risk relatives. DESIGN: Cross-sectional qualitative study. SETTING: Genetic familial cancer clinics related to mostly secondary and tertiary care hospitals and centres in urban, regional and rural areas across all states of Australia. PARTICIPANTS: GHPs (N=73) including clinical geneticists, genetic counsellors, medical specialists, nurses, surgeons and mental health specialists (eg, psychiatrists, psychologists) who had worked with BRCA1 and BRCA2 families for an average of 9 years. RESULTS: Focus groups and interviews were transcribed and analysed thematically. GHPs perceived that life stage, maturity, parents' knowledge and capacity to disseminate information influenced parent-offspring disclosure. In general, GHPs recommended early informal conversations with offspring about a family illness. GHPs considered that facilitation of disclosure to relatives using counselling strategies was their responsibility, yet there were limitations to their role (eg, legal and resource constraints). Variability exists in the extent to which genetic clinics overcome challenges to disclosure. CONCLUSIONS: GHPs' views on the ideal time for the disclosure of genetic risk are generally dependent on the patient's age and relative's ability to disclose information. A responsibility towards the patient and their at-risk relative was widely accepted as a role of a GHP but views vary depending on legislative and specialty differences. Greater uniformity is needed in genetic procedural guidelines and the role of each discipline (eg, geneticists, genetic counsellors, oncologists, nurses and mental health specialists) in genetic clinics to manage disclosure challenges.


Assuntos
Confidencialidade/ética , Testes Genéticos/ética , Pessoal de Saúde/ética , Relações Profissional-Paciente/ética , Revelação da Verdade/ética , Austrália , Estudos Transversais , Feminino , Grupos Focais , Genes BRCA1 , Genes BRCA2 , Aconselhamento Genético , Genética Médica/ética , Humanos , Masculino
14.
Hastings Cent Rep ; 49(6): 10-12, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31813180

RESUMO

Can one publish a bioethics case ethically? I suspect that most in bioethics would feel comfortable publishing a case if the subject-the patient-gave explicit permission, the amount of biographical information revealed was under the control of the subject, and the subject fully understood the benefits and risks of publishing the case. Some might add that the subject should have a chance to approve the final representation. I think that the ethics of publishing cases needs to be rethought. And this rethinking needs to be focused not on the way publishing a case might harm a patient (that is, nonmaleficence) but, rather, on how a case presentation does not convey the patient's own voice in the narrative (that is, respect for autonomy). Bioethics needs a new model of case presentation: the polyphonic case, which demands that the subject be a part of the case's construction.


Assuntos
Ética Médica , Editoração/ética , Confidencialidade/ética , Confidencialidade/normas , Humanos , Autonomia Pessoal
15.
Pediatr Ann ; 48(9): e370-e375, 2019 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-31505011

RESUMO

Most adolescents are cared for by general pediatricians, family practitioners, and mid-level providers. As a result, primary care practitioners need to be prepared to answer questions from adolescent patients and their parents about sexually transmitted infections (STIs), to practice good preventive medicine through screening and vaccination, and to provide treatment of STIs when needed. Although the topic of STIs is broad, there are common scenarios that arise in adolescent care. This review takes a pragmatic look at some of the most routine topics in adolescent health care regarding STIs, including the provision of confidential care, discussions with adolescent patients and their parents about human papillomavirus vaccination, the diagnosis and treatment of urethritis and cervicitis, and STI screening recommendations. [Pediatr Ann. 2019;48(9):e370-e375.].


Assuntos
Atenção Primária à Saúde/métodos , Infecções Sexualmente Transmissíveis/diagnóstico , Infecções Sexualmente Transmissíveis/terapia , Adolescente , Confidencialidade/ética , Confidencialidade/psicologia , Medicina de Família e Comunidade , Medicina Geral , Humanos , Vacinas contra Papillomavirus , Pediatria , Relações Médico-Paciente , Serviços Preventivos de Saúde/métodos , Relações Profissional-Família , Infecções Sexualmente Transmissíveis/psicologia
16.
J Med Ethics ; 45(12): 811-816, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31462451

RESUMO

Familial disclosure of genetic information is an important, long-standing ethical issue that still gives rise to much debate. In France, recent legislation has created an innovative and unprecedented procedure that allows healthcare professionals (HCPs), under certain conditions, to disclose relevant information to relatives of a person carrying a deleterious genetic mutation. This article will analyse how HCPs in two medical genetics clinics have reacted to these new legal provisions and show how their reticence to inform the patients' relatives on their behalf leads them to use this option sparingly.


Assuntos
Revelação/ética , Predisposição Genética para Doença , Testes Genéticos/ética , Confidencialidade/ética , Revelação/legislação & jurisprudência , Família , França , Predisposição Genética para Doença/psicologia , Testes Genéticos/legislação & jurisprudência , Humanos
17.
Indian J Med Ethics ; 4(3): 209, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31378716

RESUMO

A 25-year-old woman, six-months pregnant, came to me in great distress. She said she had been happily married for five years. Unexpectedly, a minor accidental injury to her husband had revealed that he had been suffering from a brain tumour since 2012. He had been operated on at the time but the tumour had subsequently metastasised and had required further surgery. His condition had not been revealed to the wife either at the time of the marriage or later. The husband and his family were unapologetic about the non-disclosure. When the wife confronted her husband's regular attending neurosurgeon, asking why he had not counselled the patient against marriage, he had argued that it was not his responsibility to do so. The issue this case raises is: Is it not the duty of a responsible treating doctor towards a patient with a life-threatening condition and his parents, to counsel them regarding marriage? A doctor occupies the position of a respected adviser and his counsel would surely be considered seriously.


Assuntos
Confidencialidade/ética , Casamento , Obrigações Morais , Relações Médico-Paciente/ética , Cônjuges , Adulto , Neoplasias Encefálicas/diagnóstico , Feminino , Humanos , Índia , Masculino
20.
AJOB Empir Bioeth ; 10(3): 201-213, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31050604

RESUMO

Background: Molecular epidemiology (ME) is a technique used to study the dynamics of pathogen transmission through a population. When used to study HIV infections, ME generates powerful information about how HIV is transmitted, including epidemiologic patterns of linkage and, potentially, transmission direction. Thus, ME raises challenging questions about the most responsible way to protect individual privacy while acquiring and using these data to advance public health and inform HIV intervention strategies. Here, we report on stakeholders' expectations for how researchers and public health agencies might use HIV ME. Methods: We conducted in-depth semistructured interviews with 40 key stakeholders to find out how these individuals respond to the proposed risks and benefits of HIV ME. Transcripts were coded and analyzed using Atlas.ti. Expectations were assessed through analysis of responses to hypothetical scenarios designed to help interviewees think through the implications of this emerging technique in the contexts of research and public health. Results: Our analysis reveals a wide range of imagined responsibilities, capabilities, and trustworthiness of researchers and public health agencies. Specifically, many respondents expect researchers and public health agencies to use HIV ME carefully and maintain transparency about how data will be used. Informed consent was discussed as an important opportunity for notification of privacy risks. Furthermore, some respondents wished that public health agencies were held to the same form of oversight and accountability represented by informed consent in research. Conclusions: To prevent HIV ME from becoming a barrier to testing or a source of public mistrust, the sense of vulnerability expressed by some respondents must be addressed. In research, informed consent is an obvious opportunity for this. Without giving specimen donors a similar opportunity to opt out, public health agencies may find it difficult to adopt HIV ME without deterring testing and treatment.


Assuntos
Infecções por HIV/epidemiologia , HIV/genética , Epidemiologia Molecular , Motivação , Administração em Saúde Pública , Pesquisadores , Confiança , Adulto , Idoso , Confidencialidade/ética , Feminino , Infecções por HIV/transmissão , Humanos , Consentimento Livre e Esclarecido/ética , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Epidemiologia Molecular/métodos , Epidemiologia Molecular/organização & administração , Pesquisadores/psicologia , Medição de Risco , Adulto Jovem
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