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1.
Mod Pathol ; 37(1): 100369, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37890670

RESUMO

Generative adversarial networks (GANs) have gained significant attention in the field of image synthesis, particularly in computer vision. GANs consist of a generative model and a discriminative model trained in an adversarial setting to generate realistic and novel data. In the context of image synthesis, the generator produces synthetic images, whereas the discriminator determines their authenticity by comparing them with real examples. Through iterative training, the generator allows the creation of images that are indistinguishable from real ones, leading to high-quality image generation. Considering their success in computer vision, GANs hold great potential for medical diagnostic applications. In the medical field, GANs can generate images of rare diseases, aid in learning, and be used as visualization tools. GANs can leverage unlabeled medical images, which are large in size, numerous in quantity, and challenging to annotate manually. GANs have demonstrated remarkable capabilities in image synthesis and have the potential to significantly impact digital histopathology. This review article focuses on the emerging use of GANs in digital histopathology, examining their applications and potential challenges. Histopathology plays a crucial role in disease diagnosis, and GANs can contribute by generating realistic microscopic images. However, ethical considerations arise because of the reliance on synthetic or pseudogenerated images. Therefore, the manuscript also explores the current limitations and highlights the ethical considerations associated with the use of this technology. In conclusion, digital histopathology has seen an emerging use of GANs for image enhancement, such as color (stain) normalization, virtual staining, and ink/marker removal. GANs offer significant potential in transforming digital pathology when applied to specific and narrow tasks (preprocessing enhancements). Evaluating data quality, addressing biases, protecting privacy, ensuring accountability and transparency, and developing regulation are imperative to ensure the ethical application of GANs.


Assuntos
Corantes , Confiabilidade dos Dados , Humanos , Coloração e Rotulagem , Processamento de Imagem Assistida por Computador
2.
Am J Bioeth ; : 1-12, 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39018166

RESUMO

Much of the debate over the definition and criteria for determining our death has focused on disagreement over the correct biological account of death, i.e., what it means for any organism to die. In this paper, we argue that this exclusive focus on the biology of death is misguided, because it ignores ethical and social factors that bear on the acceptability of criteria for determining our death. We propose that attention shift from strictly biological considerations to ethical and social considerations that bear on the determination of what we call "civil death." We argue for acceptance of a neurological criterion for determining death on grounds that it is the most reasonable way to synthesize biological, ethical, and social considerations about our death..

3.
BMC Med Ethics ; 25(1): 55, 2024 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-38750441

RESUMO

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.


Assuntos
Inteligência Artificial , Humanos , Estudos Transversais , Feminino , Masculino , Adulto , Inteligência Artificial/ética , Oriente Médio , Inquéritos e Questionários , África do Norte , Consentimento Livre e Esclarecido/ética , Confidencialidade/ética , Pessoa de Meia-Idade , Beneficência , Farmacêuticos/ética , Segurança Computacional , Adulto Jovem , Atitude do Pessoal de Saúde , Justiça Social , Privacidade
4.
Telemed J E Health ; 30(5): 1479-1483, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38197851

RESUMO

Background: The COVID-19 pandemic has accelerated the adoption of Electronic health (e-Health), leveraging technologies such as telemedicine, electronic health records, artificial intelligence, and patient engagement platforms. This transformation underscores e-Health's role in providing efficient, patient-centered care. Our study explores health care professionals' readiness for these technologies, emphasizing the need for tailored education in this evolving landscape. Methods: In our study, conducted between February and March 2023, we administered a questionnaire-based survey to 500 staff members (82.4% female, 17.6% male) aged 25-70 from medical universities in Tbilisi, Georgia. The structured questionnaire covered topics such as computer literacy, telemedicine awareness, patient data security, and ethical considerations. We employed SPSS v21.0 for data analysis, encompassing descriptive statistics and thematic analysis of open-ended responses. Results: Our study included 500 participants categorized into five age groups. Notably, 31% considered themselves computer "experts," while 69% rated their skills as "intermediate" or "advanced." Furthermore, 85% used computers professionally, with 33% having practical computer training. Interestingly, 59% expressed interest in information technology training. Regarding e-Health, 15% believed it involves remote communication between health care professionals and patients, while 42% considered it "correct," and 37% "might be correct." Concerning its application in managing patients, opinions varied. In terms of e-Health's integration into Georgia's health care, responses ranged. Regarding patient data safety, participants exhibited diverse views. Finally, opinions on the necessity of informed consent for e-Health applications varied among participants. Conclusions: Our study explores health care professionals' readiness for e-Health adoption during the COVID-19 pandemic. It reveals varying computer literacy levels, a willingness to learn, differing views on e-Health applications, and mixed opinions on its integration into Georgian health care. These findings emphasize the need for clear e-Health terminology, education, tailored approaches, and a focus on data privacy and informed consent. Overall, e-Health's transformative role in modern health care is underscored.


Assuntos
COVID-19 , Alfabetização Digital , Pessoal de Saúde , SARS-CoV-2 , Telemedicina , Humanos , COVID-19/epidemiologia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Idoso , República da Geórgia , Pessoal de Saúde/psicologia , Pandemias , Atitude do Pessoal de Saúde , Inquéritos e Questionários , Segurança Computacional , Atitude Frente aos Computadores , Registros Eletrônicos de Saúde
5.
Aesthetic Plast Surg ; 48(17): 3400-3405, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38777927

RESUMO

BACKGROUND: Body contouring surgery (BCS) in adolescents, particularly following bariatric surgery, involves a complex array of ethical, psychological, and medical factors. This review focuses on adolescents who have experienced significant weight loss, often due to bariatric surgery, and subsequently require body contouring to address excess skin and soft tissue. METHODS: A literature narrative review was conducted using PubMed and Google Scholar databases. Relevant articles were screened and selected based on their discussion of post-bariatric and massive weight loss body contouring surgeries in adolescents, focusing on prevalence, outcomes, and ethical considerations. RESULTS: The prevalence of BCS among adolescents is rising, influenced by social media and societal perceptions of beauty. However, the percentage of adolescents receiving BCS after bariatric surgery remains low. Adolescents undergoing BCS experience improvements in physical functioning, body image, and psychological well-being. Complications, although common, are mostly minor. Ethical considerations include ensuring informed consent, assessing emotional maturity, managing patient expectations, and involving adolescents in decision-making. Comparative analysis reveals similar outcomes in adults and adolescents, but adolescents face unique ethical challenges related to autonomy, long-term effects, and ongoing physical and emotional development. CONCLUSION: BCS in adolescents following bariatric surgery can lead to improved physical and psychological outcomes. However, the decision to undergo BCS must be carefully considered, taking into account the adolescent's maturity, expectations, and long-term well-being. Ethical considerations are paramount, emphasizing the need for informed consent, realistic expectations, and a multidisciplinary approach. Further research is needed to assess long-term outcomes and the specific ethical implications of BCS in adolescents compared to adults. LEVEL OF EVIDENCE V: This journal requires that authors assign a level of evidence to each article. For a full description of these Evidence-Based Medicine ratings, please refer to the Table of Contents or the online Instructions to Authors www.springer.com/00266 .


Assuntos
Cirurgia Bariátrica , Contorno Corporal , Humanos , Adolescente , Contorno Corporal/ética , Contorno Corporal/métodos , Cirurgia Bariátrica/ética , Feminino , Masculino , Resultado do Tratamento , Imagem Corporal/psicologia , Medição de Risco , Redução de Peso
6.
Artigo em Inglês | MEDLINE | ID: mdl-38265555

RESUMO

This commentary examines the use of artificial intelligence (AI) in forensic science, highlighting its benefits in enhancing accuracy and efficiency across a number of forensic disciplines, including medicine, anthropology, forensics, and taphonomy. However its use, also raises concerns about privacy, data protection, bias, fairness, and the reliability of AI systems. The commentary emphasises the importance of scrutiny, standardized procedures, and ongoing dialogue to ensure AI is responsibly advanced in forensic science.

7.
Artigo em Inglês | MEDLINE | ID: mdl-38175310

RESUMO

This commentary explores the integration of artificial intelligence (AI) in forensic science and its potential implications. The applications of AI in forensic disciplines such as medicine, forensic anthropology, digital forensics, and taphonomy have enhanced the accuracy and efficiency of identification processes and the analysis of digital evidence. However, this rapid advancement prompts critical considerations in privacy, data protection, bias and fairness, and the accuracy and reliability of AI systems. The inherent challenges of the "black box" nature of AI algorithms call for transparency and accountability to maintain trust and uphold the integrity of forensic investigations. Ethical use, legal compliance, interdisciplinary collaboration, education, data integrity, standardization, human oversight, and societal impact, along with sustainability are identified as pivotal areas requiring urgent attention. The discussion underscores the need for rigorous scrutiny, standardized operating procedures, and proactive dialogue to ensure the responsible advancement of AI in forensic science.

8.
Malays J Med Sci ; 31(5): 135-142, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39416729

RESUMO

This systematic review explores the complex relationship between artificial intelligence (AI) and healthcare, with an explicit focus on nursing care. Examining a range of studies from 2020, the research investigates the impact of AI on clinical decision-making, patient care and healthcare administration. Through a comprehensive literature review, the study highlights the potential benefits of AI integration in improving the efficiency and efficacy of healthcare. AI technologies offer opportunities for personalised patient care, predictive analytics and enhanced clinical processes, with the ultimate aim of transforming the healthcare system. However, ethical considerations and regulatory frameworks are crucial, emphasising patient privacy, autonomy and data security. The findings underscore the need for transparency, accountability and fairness in the application of AI in healthcare. While AI promises to improve patient outcomes and streamline healthcare delivery, careful consideration of ethical implications and regulatory compliance are essential for responsible implementation.

9.
Transpl Int ; 36: 11882, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38089003

RESUMO

Organ transplantation after brain death is challenging in Nepal due to cultural beliefs, legal frameworks, and ethical considerations. The Human Body Organ Transplantation (Regulation and Prohibition) Act (HBOTA) has not met with substantial success after its amendment. This review critically appraises the current state of brain death and organ transplantation in Nepal. It explores challenges, evaluates progress, and provides recommendations. Literature review of databases was conducted to find articles on brain death, organ donation, and transplantation in Nepal. Analysis of cultural, legal, ethical, and practical factors influencing implementation. Key challenges include limited awareness, religious beliefs, infrastructure gaps, and family consent barriers. HBOTA amendments in 2016 enabled brain death donations, however, donation rates remain low. Strategies are needed to improve public education, resources, personnel training, and collaboration. Cultural sensitivity and stakeholder engagement are crucial. A multifaceted approach addressing cultural, legal, ethical and practical dimensions is essential to improve organ donation rates in Nepal. Despite progress, substantial challenges persist requiring evidence-based strategies focused on awareness, capacity building, policy improvements, and culturally appropriate community engagement.


Assuntos
Transplante de Órgãos , Obtenção de Tecidos e Órgãos , Humanos , Morte Encefálica , Nepal , Religião
10.
BMC Med Ethics ; 24(1): 108, 2023 12 05.
Artigo em Inglês | MEDLINE | ID: mdl-38053109

RESUMO

BACKGROUND: Biobanking and genomic research requires collection and storage of human tissue from study participants. From participants' perspectives within the African context, this can be associated with fears and misgivings due to a myriad of factors including myths and mistrust of researchers. From the researchers angle ethical dilemmas may arise especially with consenting and sample reuse during storage. The aim of this paper was to explore these ethical considerations in the establishment and conduct of biobanking and genomic studies in Africa. METHODS: We conducted a narrative synthesis following a comprehensive search of nine (9) databases and grey literature. All primary research study designs were eligible for inclusion as well as both quantitative and qualitative evidence from peer reviewed journals, spanning a maximum of 20 years (2000-2020). It focused on research work conducted in Africa, even if data was stored or analysed outside the region. RESULTS: Of 2,663 title and abstracts screened, 94 full texts were retrieved and reviewed for eligibility. We included 12 studies (7 qualitative; 4 quantitative and one mixed methods). Ethical issues described in these papers related to community knowledge and understanding of biobanking and genomic research, regulation, and governance of same by research ethics committees, enrolment of participants, types of informed consents, data collection, storage, usage and sharing as well as material transfer, returning results and benefit sharing. ca. Biospecimen collection and storage is given in trust and participants expect confidentially of data and results generated. Most participants are comfortable with broad consent due to trust in researchers, though a few would like to be contacted for reconsenting in future studies, and this would depend on whether the new research is for good cause. Sharing data with external partners is welcome in some contexts but some research participants did not trust foreign researchers. CONCLUSION: Biobanking and genomic studies are a real need in Africa. Linked to this are ethical considerations related to setting up and participation in biobanks as well as data storage, export, use and sharing. There is emerging or pre-existing consensus around the acceptability of broad consent as a suitable model of consent, the need for Africans to take the lead in international collaborative studies, with deliberate efforts to build capacity in local storage and analysis of samples and employ processes of sample collection and use that build trust of communities and potential study participants. Research ethics committees, researchers and communities need to work together to work together to adapt and use clearly defined ethical frameworks, guidelines, and policy documents to harmonize the establishment and running of biobanking and genomic research in Africa.


Assuntos
Bancos de Espécimes Biológicos , Consentimento Livre e Esclarecido , Humanos , África , Genômica , Políticas
11.
Eur J Oper Res ; 310(3): 1085-1100, 2023 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-37284205

RESUMO

The COVID-19 outbreak put healthcare systems across the globe under immense pressure to meet the unprecedented demand for critical supplies and personal protective equipment (PPE). The traditional cost-effective supply chain paradigm failed to respond to the increased demand, putting healthcare workers (HCW) at a much higher infection risk relative to the general population. Recognizing PPE shortages and high infection risk for HCWs, the World Health Organization (WHO) recommends allocations based on ethical principles. In this paper, we model the infection risk for HCWs as a function of usage and use it as the basis for distribution planning that balances government procurement decisions, hospitals' PPE usage policies, and WHO ethical allocation guidelines. We propose an infection risk model that integrates PPE allocation decisions with disease progression estimates to quantify infection risk among HCWs. The proposed risk function is used to derive closed-form allocation decisions under WHO ethical guidelines in both deterministic and stochastic settings. The modelling is then extended to dynamic distribution planning. Although nonlinear, we reformulate the resulting model to make it solvable using off-the-shelf software. The risk function successfully accounts for virus prevalence in space and in time and leads to allocations that are sensitive to the differences between regions. Comparative analysis shows that the allocation policies lead to significantly different levels of infection risk, especially under high virus prevalence. The best-outcome allocation policy that aims to minimize the total infected cases outperforms other policies under this objective and that of minimizing the maximum number of infections per period.

12.
Biochemistry (Mosc) ; 87(8): 777-788, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36171658

RESUMO

The development of a method for genome editing based on CRISPR-Cas9 technology was awarded The Nobel Prize in Chemistry in 2020, less than a decade after the discovery of all principal molecular components of the system. For the first time in history a Nobel prize was awarded to two women, Emmanuelle Charpentier and Jennifer Doudna, who made key discoveries in the field of DNA manipulation with the CRISPR-Cas9 system, so-called "genetic scissors". It is difficult to overestimate the importance of the technique as it enables one not only to manipulate genomes of model organisms in scientific experiments, and modify characteristics of important crops and animals, but also has the potential of introducing revolutionary changes in medicine, especially in treatment of genetic diseases. The original biological function of CRISPR-Cas9 system is the protection of prokaryotes from mobile genetic elements, in particular viruses. Currently, CRISPR-Cas9 and related technologies have been successfully used to cure life-threatening diseases, make coronavirus detection tests, and even to modify human embryo cells with the consequent birth of babies carrying the introduced modifications. This intervention with human germplasm cells resulted in wide disapproval in the scientific community due to ethical concerns, and calls for a moratorium on inheritable genomic manipulations. This review focuses on the history of the discovery of the CRISPR-Cas9 system with some aspects of its current applications, including ethical concerns about its use in humans.


Assuntos
Edição de Genes , Vírus , Animais , Sistemas CRISPR-Cas , Feminino , Edição de Genes/métodos , Genômica , Humanos
13.
BMC Med Ethics ; 23(1): 3, 2022 01 11.
Artigo em Inglês | MEDLINE | ID: mdl-35012535

RESUMO

BACKGROUND: There have been notable investments in large multi-partner research programmes across the agriculture-nutrition-health (ANH) nexus. These studies often involve human participants and commonly require research ethics review. These ANH studies are complex and can raise ethical issues that need pre-field work, ethical oversight and also need an embedded process that can identify, characterise and manage ethical issues as the research work develops, as such more embedded and dynamic ethics processes are needed. This work builds on notions of 'ethics in practice' by developing an approach to facilitate ethical reflection within large research programmes. This study explores the application of a novel 'real-time research ethics approach' (RTREA) and how this can support ethical mindfulness. This involves embedding ethical analysis and decision-making within research implementation, with a continuous dialogue between participants and researchers. The aim is to improve ethical responsiveness and participant experience, which in turn may ethically support adherence and retention. In this case study, a bioethics team (BT) was embedded in a community-based randomised, controlled trial conducted in rural Malawi, titled the 'Addressing Hidden Hunger with Agronomy'. To identify ethical issues, the researchers conducted ten focus group discussions, fourteen in-depth interviews with key informants, two workshops, observed two sensitisation and three activity meetings conducted by the trial team, and analysed fifteen reports from pre-trial to trial implementation. RESULTS: The RTREA facilitated the identification of social and ethical concerns and made researchers aware of participants' 'lived research experience'. To address concerns and experiences, the BT worked with researchers to facilitate conversation spaces where social and ethical issues were discussed. Conversation spaces were designed to create partnerships and promote participatory methods to capture trial participants' (TPs) perspectives and experiences. CONCLUSIONS: The use of RTREA showed the value of real-time and continuous engagement between TPs and researchers. These real-time processes could be embedded to complement traditional ethical guidance and expert opinions. A deeper engagement appeared to support greater operationalising of principles of inclusion, empowerment, and participant autonomy and supported researchers 'ethical mindfulness' which in turn may support instrumental outcomes of high recruitment, retention, and adherence levels.


Assuntos
Atenção Plena , Agricultura , Ética em Pesquisa , Humanos , Malaui , Pesquisadores
14.
J Med Internet Res ; 24(11): e40380, 2022 11 29.
Artigo em Inglês | MEDLINE | ID: mdl-36445739

RESUMO

BACKGROUND: Much research is being carried out using publicly available Twitter data in the field of public health, but the types of research questions that these data are being used to answer and the extent to which these projects require ethical oversight are not clear. OBJECTIVE: This review describes the current state of public health research using Twitter data in terms of methods and research questions, geographic focus, and ethical considerations including obtaining informed consent from Twitter handlers. METHODS: We implemented a systematic review, following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, of articles published between January 2006 and October 31, 2019, using Twitter data in secondary analyses for public health research, which were found using standardized search criteria on SocINDEX, PsycINFO, and PubMed. Studies were excluded when using Twitter for primary data collection, such as for study recruitment or as part of a dissemination intervention. RESULTS: We identified 367 articles that met eligibility criteria. Infectious disease (n=80, 22%) and substance use (n=66, 18%) were the most common topics for these studies, and sentiment mining (n=227, 62%), surveillance (n=224, 61%), and thematic exploration (n=217, 59%) were the most common methodologies employed. Approximately one-third of articles had a global or worldwide geographic focus; another one-third focused on the United States. The majority (n=222, 60%) of articles used a native Twitter application programming interface, and a significant amount of the remainder (n=102, 28%) used a third-party application programming interface. Only one-third (n=119, 32%) of studies sought ethical approval from an institutional review board, while 17% of them (n=62) included identifying information on Twitter users or tweets and 36% of them (n=131) attempted to anonymize identifiers. Most studies (n=272, 79%) included a discussion on the validity of the measures and reliability of coding (70% for interreliability of human coding and 70% for computer algorithm checks), but less attention was paid to the sampling frame, and what underlying population the sample represented. CONCLUSIONS: Twitter data may be useful in public health research, given its access to publicly available information. However, studies should exercise greater caution in considering the data sources, accession method, and external validity of the sampling frame. Further, an ethical framework is necessary to help guide future research in this area, especially when individual, identifiable Twitter users and tweets are shared and discussed. TRIAL REGISTRATION: PROSPERO CRD42020148170; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=148170.


Assuntos
Saúde Pública , Mídias Sociais , Humanos , Reprodutibilidade dos Testes , PubMed , Acesso à Informação
15.
BMC Med Ethics ; 22(1): 154, 2021 11 19.
Artigo em Inglês | MEDLINE | ID: mdl-34798900

RESUMO

BACKGROUND: The return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results. METHODS: This was a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis. RESULTS: The return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks. CONCLUSIONS: The return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice.


Assuntos
Genômica , Pesquisadores , Comitês de Ética em Pesquisa , Genoma , Humanos , Pesquisa Qualitativa , Uganda
16.
Pediatr Blood Cancer ; 66(4): e27602, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30609294

RESUMO

Allogeneic hematopoietic stem cell transplantation is curative for primary immunodeficiencies. Bone marrow from an unaffected human leukocyte antigen (HLA)-identical sibling donor is the ideal graft source. For minor donors, meaningful consent or assent may not be feasible, and permission from parents or legal guardians is considered acceptable. Adverse events, albeit extremely small, can be associated with bone marrow harvest in pediatric donors. Donor safety concerns potentially increase with multiple bone marrow harvests. Very little is known about multiple bone marrow harvests from pediatric donors. We describe the ethical considerations and clinical decision-making in an unusual clinical situation where three patients with the same primary immunodeficiency were HLA identical to one another and their younger sibling, who underwent bone marrow harvests three times between 1.3 and 4 years of age, resulting in successful transplantation for all three patients. We hope that this experience will provide guidance to providers and families in a similar situation.


Assuntos
Temas Bioéticos , Transplante de Medula Óssea/ética , Transplante de Células-Tronco Hematopoéticas/etnologia , Síndromes de Imunodeficiência/terapia , Irmãos , Doadores de Tecidos , Pré-Escolar , Feminino , Humanos , Lactente , Masculino
18.
Support Care Cancer ; 27(8): 2783-2788, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30523413

RESUMO

BACKGROUND: Data on patients' needs with respect to physicians' ethical behavior and virtues are important but not available in most cases. PATIENTS AND METHODS: In an iterative process together with patients' representatives, we developed a standardized questionnaire which was distributed to the representatives of the Women's Self-Help after Cancer in Germany. We started with the classical ethical virtues and clustered them to characteristics. The patients' representatives were asked to rate in different communications settings. RESULTS: One hundred eighty-six patients' representatives took part in the survey. For four communication situations (first communication on symptoms, diagnosis of cancer, choice of therapy, doubts on therapy), competence was rated as very important by 80-89% and as important by 6-7%; honesty as very important by 78-89% and as important by 5-12%; respect as very important by 66-71% and as important by 19-21%; and patience as very important by 55-68% and as important by 6-24%. Compassion was rated as less important, with only 24-31% rating it as very important and another 26-32% as important. Additional desires expressed by the participants were physicians having more time (9.1%) and a better relationship between physician and patient (7.0%). CONCLUSION: Competence, honesty, respect, and patience are important characteristics which should be focused on in communication training of medical students and physicians. In spite of compassion being rated as less important, training on compassion/empathy might help doctors to improve coping with the continuous confrontation with complications, progress, suffering, and death of their patients.


Assuntos
Comunicação , Necessidades e Demandas de Serviços de Saúde , Neoplasias , Relações Médico-Paciente , Médicos , Virtudes , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Competência Clínica , Empatia , Ética Médica , Feminino , Alemanha/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Neoplasias/psicologia , Neoplasias/terapia , Defesa do Paciente , Relações Médico-Paciente/ética , Médicos/ética , Médicos/psicologia , Médicos/normas , Médicos/estatística & dados numéricos , Inquéritos e Questionários , Revelação da Verdade/ética
19.
BMC Med Ethics ; 19(1): 83, 2018 10 20.
Artigo em Inglês | MEDLINE | ID: mdl-30342507

RESUMO

BACKGROUND: The U.S. National Institute of Allergies and Infectious Diseases (NIAID) and the National Institute of Mental Health (NIMH) have a new research priority: inclusion of terminally ill persons living with HIV (PLWHIV) in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego (UCSD) for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. DISCUSSION: As end-of-life (EOL) HIV cure research is relatively new, the scientific community has a timely opportunity to examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders (biomedical researchers, PLWHIV, bioethicists, and socio-behavioral scientists) and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders. CONCLUSION: EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable.


Assuntos
Pesquisa Biomédica/ética , Infecções por HIV/terapia , Assistência Terminal/ética , Altruísmo , Autopsia/ética , Humanos , Consentimento Livre e Esclarecido/ética , Autonomia Pessoal
20.
Mar Drugs ; 15(7)2017 Jun 24.
Artigo em Inglês | MEDLINE | ID: mdl-28672802

RESUMO

Normative ethical considerations of growth of the marine biotechnology and aquaculture disciplines in biopharming, food production, and marine products commercialization from a bioethical perspective have been limited. This paucity of information begs the question of what constitutes a bioethical approach (i.e., respect for individuals or autonomy; beneficence, nonmaleficence, and justice) to marine biotechnology and aquaculture, and whether it is one that is appropriate for consideration. Currently, thoughtful discussion on the bioethical implications of use, development, and commercialization of marine organisms or their products, as well as potential environmental effects, defaults to human biomedicine as a model. One must question the validity of using human bioethical principlism moral norms for appropriating a responsible marine biotechnology and aquaculture ethic. When considering potential impacts within these disciplines, deference must be given to differing value systems in order to find common ground to advance knowledge and avoid emotive impasses that can hinder the science and its application. The import of bioethical considerations when conducting research and/or production is discussed. This discussion is directed toward applying bioethical principles toward technology used for food, biomedical development (e.g., biopharming), or as model species for advancement of knowledge for human diseases.


Assuntos
Aquicultura/ética , Organismos Aquáticos , Temas Bioéticos , Biotecnologia/ética , Animais , Humanos
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