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1.
Pharmacogenomics ; 22(11): 693-701, 2021 07.
Article in English | MEDLINE | ID: mdl-34114883

ABSTRACT

Given the expansion of genetics in medicine, there is a growing need to develop approaches to engage patients in understanding how genetics affects their health. Various qualitative methods have been applied to gain a deeper understanding of patient perspectives in topics related to genetics. Community dialogues (CD) are a bi-directional research method that invites community members to discuss a pertinent, challenging topic over the course of a multi-week period and the community members openly discuss their positions on the topic. Authors discuss the first application of the CD method to the topic of pharmacogenetics testing. Additional CD are needed to engage diverse participant populations on this topic to improve genetics literacy, enhance physician engagement and drive policy change.


Subject(s)
Health Literacy/ethics , Pharmacogenetics/ethics , Pharmacogenomic Testing/ethics , Precision Medicine/ethics , Bioethical Issues/standards , Focus Groups/standards , Health Literacy/standards , Humans , Pharmacogenetics/standards , Pharmacogenomic Testing/standards , Precision Medicine/standards
2.
Stem Cell Reports ; 16(6): 1398-1408, 2021 06 08.
Article in English | MEDLINE | ID: mdl-34048692

ABSTRACT

The International Society for Stem Cell Research has updated its Guidelines for Stem Cell Research and Clinical Translation in order to address advances in stem cell science and other relevant fields, together with the associated ethical, social, and policy issues that have arisen since the last update in 2016. While growing to encompass the evolving science, clinical applications of stem cells, and the increasingly complex implications of stem cell research for society, the basic principles underlying the Guidelines remain unchanged, and they will continue to serve as the standard for the field and as a resource for scientists, regulators, funders, physicians, and members of the public, including patients. A summary of the key updates and issues is presented here.


Subject(s)
Bioethical Issues/standards , Policy , Practice Guidelines as Topic , Societies, Scientific/standards , Stem Cell Research/ethics , Stem Cells , Humans , Societies, Scientific/ethics
3.
Hastings Cent Rep ; 51(3): 3-4, 2021 May.
Article in English | MEDLINE | ID: mdl-34028820

ABSTRACT

The Covid-19 pandemic has exposed four myths in bioethics. First, the flood of bioethics publications on how to allocate scarce resources in crisis conditions has assumed authorities would declare the onset of crisis standards of care, yet few have done so. This leaves guidelines in limbo and patients unprotected. Second, the pandemic's realities have exploded traditional boundaries between clinical, research, and public health ethics, requiring bioethics to face the interdigitation of learning, doing, and allocating. Third, without empirical research, the success or failure of ethics guidelines remains unknown, demonstrating that crafting ethics guidance is only the start. And fourth, the pandemic's glaring health inequities require new commitment to learn from communities facing extraordinary challenges. Without that new learning, bioethics methods cannot succeed. The pandemic is a wake-up call, and bioethics must rise to the challenge.


Subject(s)
Bioethical Issues/standards , COVID-19/epidemiology , Health Care Rationing/organization & administration , Biomedical Research/ethics , Biomedical Research/organization & administration , Health Care Rationing/ethics , Health Care Rationing/standards , Health Status Disparities , Healthcare Disparities/ethics , Healthcare Disparities/standards , Humans , Pandemics , Public Health , SARS-CoV-2
4.
Multimedia | Multimedia Resources | ID: multimedia-8484

ABSTRACT

La rápida producción de evidencia en el contexto de la pandemia hace que la supervisión ética de las investigaciones en curso sea más difícil. El Programa Regional de Bioética de la OPS discutirá con expertos de Argentina, Brasil, Chile y Panamá la “Orientación para la supervisión ética de las investigaciones sobre COVID-19 ante la generación de nueva evidencia” y los desafíos de asegurar una supervisión ética adecuada en nuestra región. Lo invitamos a revisar el documento a presentarse en el seminario virtual con traducción simultánea en español e inglés. Para registrarse vaya a este link: https://paho-org.zoom.us/webinar/register/WN_L1WIZiaESou68EalSwsJfg


Subject(s)
Coronavirus Infections/prevention & control , Pneumonia, Viral/prevention & control , Bioethical Issues/standards , PAHO Ethics Review Committee , Human Experimentation/ethics , Pandemics/ethics , Clinical Trial Protocol , Ethics Committees, Research , South America
5.
Salud pública Méx ; 62(5): 590-592, sep.-oct. 2020.
Article in English | LILACS | ID: biblio-1390322

ABSTRACT

Abstract On April 12, 2020, a bioethics guide for allocating scarce hospital resources during the current Covid-19 pandemic was posted on the website of the Consejo de Salubridad General (CSG) of the Government of Mexico. The guide, entitled Guía bioética para asignación de recursos limitados de medicina crítica en situación de emergencia, was intended as a preliminary document, but the website posting did not describe it as a first step in the process. The publicity resulted in a wide array of comments and criticisms. That first version posted on the CSG website contained an age-based criterion for breaking a tie between two or more medically eligible patients who needed of a ventilator: younger patients would have preference over older ones. The final version of the guide eliminated that criterion and instead, relied on the leading public health principle, "save the most lives", without regard to personal characteristics other than the possibility of benefitting from the scarce medical resources.


Resumen El 12 de abril de 2020, se publicó en el sitio web del Consejo de Salubridad General (CSG) del Gobierno de México una guía de bioética para asignar recursos hospitalarios escasos durante la actual pandemia de Covid-19. La guía titulada Guía bioética para asignación de recursos limitados de medicina crítica en situación de emergencia pretendía ser un documento preliminar, pero la publicación en el sitio web no lo describió como un primer paso en el proceso. La publicación resultó en una amplia gama de comentarios y críticas. La primera versión publicada en el sitio web del CSG contenía un criterio basado en la edad para romper el empate entre dos o más pacientes médicamente elegibles que necesitaran un ventilador: los pacientes más jóvenes tendrían preferencia sobre los de mayor edad. La versión final de la guía eliminó ese criterio y, en cambio, se basó en el principio principal de salud pública, "salvar la mayoría de las vidas", sin tener en cuenta las características personales que no sean la posibilidad de beneficiarse de los escasos recursos médicos.


Subject(s)
Humans , Pneumonia, Viral , Triage/ethics , Practice Guidelines as Topic , Coronavirus Infections , Bioethical Issues/standards , Resource Allocation/ethics , Pandemics , Health Resources/supply & distribution , Pneumonia, Viral/therapy , Pneumonia, Viral/epidemiology , Social Justice , Ventilators, Mechanical/supply & distribution , Life Expectancy , Triage/standards , Coronavirus Infections/drug therapy , Coronavirus Infections/therapy , Coronavirus Infections/epidemiology , Withholding Treatment/standards , Withholding Treatment/ethics , Value of Life , Decision Making , Dissent and Disputes , Ageism , Betacoronavirus , SARS-CoV-2 , COVID-19 , Health Services Needs and Demand , Mexico
6.
Salud pública Méx ; 62(5): 607-609, sep.-oct. 2020.
Article in Spanish | LILACS | ID: biblio-1390325

ABSTRACT

Resumen El tema bioético sobre la asignación de recursos escasos no es nuevo, todos los países que han sido gravemente afectados por el SARS-CoV-2 han tenido que desarrollar y utilizar guías de triaje. Esto resulta más adecuado pues así la asignación de recursos limitados se hace de manera ética y justa, y no de manera discrecional y abierta a la corrupción. En México, en anticipación a la fase exponencial de la pandemia por SARS-CoV-2, el 30 de abril el Consejo de Salubridad General publicó la Guía bioética para asignación de recursos limitados de medicina crítica en situación de emergencia. Dicha guía tiene como base criterios de justicia social y parte de la tesis: todas las vidas tienen el mismo valor. Este texto tiene como objetivo proporcionar las razones bioéticas y biojurídicas que conforman esta guía de triaje en nuestro país. En resumen, proporciona una breve exploración de las razones éticas que justifican cierta manera específica de asignar recursos escasos en medicina crítica, así como del sustento procedimental apegado a los estándares en materia de derechos humanos.


Abstract The bioethical inquiry about allocating fairly scarce health resources is not new, all countries around the world that were seriously afflicted by SARS-CoV-2 have issued triage guidelines in order to address the dilemmas raised by the pandemic. There is no question about the need to create bioethical guidelines, since its creation provides a degree of certainty that fair and ethical decisions are taken. This also prevents that decisions are made in solitary and maybe motivated by corrupted actions. In Mexico, the creation of this guideline was a proactive and preventive measure to what was unavoidable, the exponential contagion phase of the pandemical scenario caused by Covid-19. On April 30, 2020 the General Sanitary Council published the Bioethical Guide to Allocate Scarce Resources on Critical Care Medicine in Emergency Situation. This guide has at its core that principle of utmost importance in social justice which main thesis is: "All lives have the same value". The aim of this contribution is to provide the ethical and legal principles established in the aforementioned bioethical guideline. In sum, a brief exploration of the ethical reasons that support a specific way to allocate scarce health resources is provided, as well as the foundations of the procedural part from a human rights-based approach.


Subject(s)
Humans , Pneumonia, Viral , Triage/ethics , Practice Guidelines as Topic , Coronavirus Infections , Bioethical Issues/standards , Resource Allocation/ethics , Pandemics , Health Resources/supply & distribution , Pneumonia, Viral/epidemiology , Social Justice , Triage/standards , Coronavirus Infections/epidemiology , Withholding Treatment/standards , Withholding Treatment/ethics , Value of Life , Decision Making , Betacoronavirus , SARS-CoV-2 , COVID-19 , Government Agencies , Health Services Needs and Demand , Mexico
7.
Salud Publica Mex ; 62(5): 607-609, 2020.
Article in Spanish | MEDLINE | ID: mdl-32614545

ABSTRACT

The bioethical inquiry about allocating fairly scarce health resources is not new, all countries around the world that were seriously afflicted by SARS-CoV-2 have issued triage guidelines in order to address the dilemmas raised by the pandemic. There is no question about the need to create bioethical guidelines, since its creation provides a degree of certainty that fair and ethical decisions are taken. This also prevents that decisions are made in solitary and maybe motivated by corrupted actions. In Mexico, the creation of this guideline was a proactive and preventive measure to what was unavoidable, the exponential contagion phase of the pandemical scenario caused by Covid-19. On April 30, 2020 the General Sanitary Council published the Bioethical Guide to Allocate Scarce Resources on Critical Care Medicine in Emergency Situation. This guide has at its core that principle of utmost importance in social justice which main thesis is: "All lives have the same value". The aim of this contribution is to provide the ethical and legal principles established in the aforementioned bioethi-cal guideline. In sum, a brief exploration of the ethical reasons that support a specific way to allocate scarce health resources is provided, as well as the foundations of the procedural part from a human rights-based approach.


El tema bioético sobre la asignación de recursos escasos no es nuevo, todos los países que han sido gravemente afectados por el SARS-CoV-2 han tenido que desarrollar y utilizar guías de triaje. Esto resulta más adecuado pues así la asignación de recursos limitados se hace de manera ética y justa, y no de manera discrecional y abierta a la corrupción. En México, en anticipación a la fase exponencial de la pandemia por SARS-CoV-2, el 30 de abril el Consejo de Salubridad General publicó la Guía bioética para asignación de recursos limitados de medicina crítica en situación de emergencia. Dicha guía tiene como base criterios de justicia social y parte de la tesis: todas las vidas tienen el mismo valor. Este texto tiene como objetivo propor-cionar las razones bioéticas y biojurídicas que conforman esta guía de triaje en nuestro país. En resumen, proporciona una breve exploración de las razones éticas que justifican cierta manera específica de asignar recursos escasos en medicina crítica, así como del sustento procedimental apegado a los estándares en materia de derechos humanos.


Subject(s)
Bioethical Issues/standards , Coronavirus Infections , Health Resources/supply & distribution , Pandemics , Pneumonia, Viral , Practice Guidelines as Topic , Resource Allocation/ethics , Triage/ethics , Betacoronavirus , COVID-19 , Coronavirus Infections/epidemiology , Decision Making , Government Agencies , Health Services Needs and Demand , Humans , Mexico , Pneumonia, Viral/epidemiology , SARS-CoV-2 , Social Justice , Triage/standards , Value of Life , Withholding Treatment/ethics , Withholding Treatment/standards
8.
Salud Publica Mex ; 62(5): 590-592, 2020.
Article in English | MEDLINE | ID: mdl-32516867

ABSTRACT

On April 12, 2020, a bioethics guide for allocating scarce hospital resources during the current Covid-19 pandemic was posted on the website of the Consejo de Salubridad General(CSG) of the Government of Mexico. The guide, entitled Guía bioética para asignación de recursos limitados de medicina crítica en situación de emergencia, was intended as a preliminary document, but the website posting did not describe it as a first step in the process. The publicity resulted in a wide array of comments and criticisms. That first version posted on the CSG website contained an age-based criterion for breaking a tie between two or more medically eligible patients who needed of a ventilator: younger patients would have prefer-ence over older ones. The final version of the guide eliminated that criterion and instead, relied on the leading public health principle, "save the most lives", without regard to personal characteristics other than the possibility of benefitting from the scarce medical resources.


El 12 de abril de 2020, se publicó en el sitio web del Consejo de Salubridad General (CSG) del Gobierno de México una guía de bioética para asignar recursos hospitalarios escasos durante la actual pandemia de Covid-19. La guía titulada Guía bioética para asignación de recursos limitados de medicina crítica en situación de emergencia pretendía ser un documento pre-liminar, pero la publicación en el sitio web no lo describió como un primer paso en el proceso. La publicación resultó en una amplia gama de comentarios y críticas. La primera versión publicada en el sitio web del CSG contenía un cri-terio basado en la edad para romper el empate entre dos o más pacientes médicamente elegibles que necesitaran un ventilador: los pacientes más jóvenes tendrían preferencia sobre los de mayor edad. La versión final de la guía eliminó ese criterio y, en cambio, se basó en el principio principal de salud pública, "salvar la mayoría de las vidas", sin tener en cuenta las características personales que no sean la posibilidad de beneficiarse de los escasos recursos médicos.


Subject(s)
Bioethical Issues/standards , Coronavirus Infections , Health Resources/supply & distribution , Pandemics , Pneumonia, Viral , Practice Guidelines as Topic , Resource Allocation/ethics , Triage/ethics , Ageism , Betacoronavirus , COVID-19 , Coronavirus Infections/drug therapy , Coronavirus Infections/epidemiology , Coronavirus Infections/therapy , Decision Making , Dissent and Disputes , Health Services Needs and Demand , Humans , Life Expectancy , Mexico , Pneumonia, Viral/epidemiology , Pneumonia, Viral/therapy , SARS-CoV-2 , Social Justice , Triage/standards , Value of Life , Ventilators, Mechanical/supply & distribution , Withholding Treatment/ethics , Withholding Treatment/standards , COVID-19 Drug Treatment
10.
Cancer Prev Res (Phila) ; 13(3): 219-222, 2020 03.
Article in English | MEDLINE | ID: mdl-32132115

ABSTRACT

The Risk Assessment Program (RAP) at Fox Chase Cancer Center (Philadelphia, PA) is a multi-generational prospective cohort, enhanced for personal and family history of cancer, consisting of over 10,000 individuals for whom data on personal and family history of cancer, risk factors, genetic and genomic data, health behaviors, and biospecimens are available. The RAP has a broad research agenda including the characterization of genes with known or potential relevance to cancer, gene-gene and gene-environment interactions, and their contribution to clinically useful risk assessment and risk reduction strategies. Increasingly, this body of research is identifying genetic changes which may have clinical significance for RAP research participants, leading us to confront the issue of whether to return genetic results emerging from research laboratories. This review will describe some of the important fundamental points that must be debated as we develop a paradigm for return of research results. The key issues to address as the scientific community moves toward adopting a policy of return of research results include the best criteria for determining which results to offer, the consent document components necessary to ensure that the participant makes a truly informed decision about receiving their results, and associated logistical and cost challenges.See all articles in this Special Collection Honoring Paul F. Engstrom, MD, Champion of Cancer Prevention.


Subject(s)
Disclosure/ethics , Genetic Testing/ethics , Genomics/ethics , Neoplasms/genetics , Prospective Studies , Bioethical Issues/legislation & jurisprudence , Bioethical Issues/standards , Consensus , Consent Forms , Decision Making , Disclosure/legislation & jurisprudence , Disclosure/standards , Ethics Committees, Research/standards , Gene-Environment Interaction , Genetic Predisposition to Disease , Genetic Testing/legislation & jurisprudence , Genetic Testing/standards , Genomics/legislation & jurisprudence , Genomics/standards , Humans , Information Dissemination/ethics , Information Dissemination/legislation & jurisprudence , Medical History Taking , Neoplasms/epidemiology , Neoplasms/prevention & control , Registries/ethics , Registries/standards , Risk Assessment/legislation & jurisprudence
11.
Rheum Dis Clin North Am ; 46(1): 119-133, 2020 02.
Article in English | MEDLINE | ID: mdl-31757280

ABSTRACT

Physicians in training and their mentors must be cognizant of ethical concerns related to industry interactions. Mentors perceived to have conflicts of interest or to be engaging in misconduct can unconsciously and profoundly affect the learning and academic environment by implying certain values and expectations. Despite increased awareness of ethical concerns related to industry interactions in clinical practice and research, there remains a need for interventions to prevent ethical transgressions. Ethics education is essential and a move in the right direction, but it alone is likely inadequate in preventing unethical behavior. Education should be supplemented with ethical environments at institutions.


Subject(s)
Drug Industry/ethics , Education, Medical/ethics , Ethics, Clinical , Professional Practice/ethics , Research Support as Topic/ethics , Rheumatology/ethics , Bioethical Issues/standards , Biomedical Research/economics , Biomedical Research/education , Biomedical Research/ethics , Conflict of Interest/economics , Curriculum/standards , Drug Industry/economics , Ethics, Clinical/education , Mentoring/ethics , Patient Care/economics , Patient Care/ethics , Patient Care/standards , Professional Practice/economics , Professional Practice/standards , Rheumatology/economics , Rheumatology/education , Training Support/economics , Training Support/ethics
12.
Article in Spanish | LILACS | ID: biblio-1100478

ABSTRACT

Lay bioethics is an applied ethic that allows us to face the problems generated by the tension between science and the human being.The current pandemic caused by an unknown infectious agent has highlighted the need for the application of this applied ethic, not located on the laurels of the ethereal or purely intellectual, but rather based in day-to-day reality. Decision-making from all areas of health care requires this fundamental frame of reference; the application of correct precepts in epidemiological, sanitary decisions and political measures cannot and should not be done without this frame of reference; or the result will be catastrophic.


La Bioética laica es en principio una ética aplicada que permite afrontar los problemas generados por la tensión existente entre la ciencia y el ser humano. La actual pandemia causada por un agente infeccioso no conocido ha puesto de relieve la necesidad de la aplicación de esta ética aplicada, no ubicada en los laureles de lo etéreo o puramente intelectual sino más bien asentada en la realidad del día a día. La toma de decisiones desde todos los ámbitos del quehacer sanitario requiere este marco referencial fundamental; aplicación de correctos preceptos en las decisiones epidemiológicas, sanitarias y medidas políticas no puede ni debe hacerse sin este marco referencial; otrora el resultado será catastrófico.(AU)


Subject(s)
Humans , Global Health/statistics & numerical data , Bioethical Issues/standards , Betacoronavirus 1/immunology , Bioethics , International Health Regulations/statistics & numerical data
13.
Aten. prim. (Barc., Ed. impr.) ; 51(5): 269-277, mayo 2019. tab
Article in Spanish | IBECS | ID: ibc-180875

ABSTRACT

Objetivo: Explorar la percepción acerca de la presencia de familiares durante la reanimación cardiopulmonar (RCP) en pacientes adultos, de los propios pacientes y familiares, enfermeras y médicos. Diseño: Se desarrolló un estudio cualitativo exploratorio y un análisis temático. Emplazamiento: Atención Primaria, Atención Hospitalaria y Servicio de Emergencias del Servicio Vasco de Salud. Participantes: La selección de los participantes se realizó a través de muestreo intencional. Se desarrollaron 4 grupos de discusión: uno de pacientes y familiares, 2 de enfermeras y uno de médicos. Método: Se realizó un análisis temático. Se utilizaron técnicas de triangulación entre investigadores e investigador-informante. Se utilizó el programa informático Open Code 4.1. Resultados: Se identificaron 3 categorías significativas: impacto de la actuación en la familia; peso de la responsabilidad ética y legal; poder, lugar donde sucede la parada y supuestos culturales. Conclusiones: La RCP es un constructo social influido por los valores de los contextos socioculturales específicos. En este estudio, los pacientes y familiares describieron temor y resistencia a presenciar la RCP. Por su parte, los profesionales sanitarios consideran que su decisión reviste complejidad, siendo necesario valorar cada caso de forma independiente e integrando a pacientes y familiares en la toma de decisiones. Como líneas de investigación futuras sería recomendable profundizar sobre la experiencia subjetiva de familiares que hayan presenciado la RCP y el impacto de los elementos contextuales y socioculturales en sus percepciones


Objective: To determine the perception of nurses, doctors, patients and family or relatives being present during cardiopulmonary resuscitation (CPR) in adult patients. Design: A qualitative exploratory study and thematic analysis were developed. Site: Primary Care, Hospital Care and Emergency Service of the Basque Health Service. Participants.The selection of the participants was made through intentional sampling. Four focus groups were developed: one of patients and family, 2 of nurses, and one of physicians. Method: Thematic analysis was performed. Triangulation techniques were used between investigators and investigator-participant member. The Open code 4.1 statistics software was used. Results: Three significant categories were identified: the impact on the family; the weight of ethical and legal responsibility; power, place of death, and cultural assumptions. Conclusions: CPR is a social construct influenced by values which are situated in specific socio-cultural contexts. In this study, patients and family members describe the fear and resistance to being present during CPR. Health professionals consider that their decision is complex, and each case must be assessed independently, and patients and relatives must be integrated into decision-making. Future research should explore in greater depth the subjective experience of relatives who have witnessed CPR and the impact of contextual and sociocultural elements from the perspectives of relatives


Subject(s)
Humans , Male , Female , Adult , Middle Aged , Medical Chaperones/standards , Cardiopulmonary Resuscitation/standards , Heart Arrest/therapy , Emergency Treatment/standards , Bioethical Issues/standards , Social Perception , Fear , Attitude of Health Personnel , Qualitative Research , Focus Groups/methods
14.
Hastings Cent Rep ; 49(2)2019 03.
Article in English | MEDLINE | ID: mdl-30998282

ABSTRACT

As part of the celebrations of The Hastings Center's fiftieth anniversary, we are launching an annual prize, The David Roscoe Award for an Early-Career Scholar's Essay on Science, Ethics, and Society. The award is named in honor of David Roscoe, an accomplished essayist and recent past chair of the Hastings board. The award is intended to highlight the good scholarship that will take the field of bioethics forward into the next fifty years. It will recognize an early-career scholar-someone who either is currently pursuing a relevant academic degree or has earned one within the last six years-for a published essay on the social and ethical implications of advances in science and technology. More information about the award, along with online submission forms, is available on The Hastings Center's website.


Subject(s)
Awards and Prizes , Fellowships and Scholarships/standards , Academies and Institutes , Bioethical Issues/standards , Financial Support , Humans
15.
Cad Saude Publica ; 35(2): e00122918, 2019 03 14.
Article in Portuguese | MEDLINE | ID: mdl-30892424

ABSTRACT

Awareness of the discussion surrounding the social and ethical challenges regarding gamete donation is crucial for good governance of assisted reproduction techniques. In this article, we analyze the topics that guided the debate in the Portuguese ethics organizations, discussing their connections with themes addressed internationally. To that end, in March 2018, we systematically searched the websites of the National Council of Medically Assisted Procreation and of the National Ethics Council for Life Sciences. We carried out a thematic content analysis of 25 documents. Results indicate that the debate was focused on accessibility, anonymity and donors' compensation and, to a lesser extent, on professional responsibilities. We observed heterogeneous positions and tensions between multiple rights and ethical principles associated with recipients, donor-conceived individuals and donors. These invoke three similar arguments: the scarcity of scientific evidence; experiences from other countries; and regulations from in international entities. Literature addressed additional topics, namely: a double track that combines donor anonymity/identification; the implementation of reproduction registries for recipients and donors; limits to the genetic screening of donors; donations by family members/acquaintances; and donors' role in decisions regarding the fate of cryopreserved embryos and in choosing the characteristics of recipients of their gametes. There is room to expand the debate and to promote research on the social and ethical implications of gamete donation, considering the participation of all citizens.


Conhecer a discussão em torno dos desafios sociais e éticos da doação de gametas é fundamental para a boa governança das técnicas de reprodução assistida. Neste artigo, analisam-se os tópicos que orientaram o debate nas organizações de ética portuguesas, discutindo as suas conexões com os temas abordados internacionalmente. Para tal, em março de 2018, pesquisamos sistematicamente os websites do Conselho Nacional de Procriação Medicamente Assistida e do Conselho Nacional de Ética para as Ciências da Vida. Procedemos à análise de conteúdo temática de 25 documentos. Os resultados indicam que o debate se centrou na acessibilidade, no anonimato e na compensação de doadores e, em menor extensão, nas responsabilidades profissionais. Observaram-se posicionamentos heterogêneos e tensões entre múltiplos direitos e princípios éticos associados a receptores, a pessoas nascidas com recurso à doação de gametas e a doadores. Esses têm em comum três alegações: a escassez de evidência científica; as experiências de outros países; e regulamentações oriundas de entidades internacionais. Na literatura abordam-se tópicos adicionais, nomeadamente: uma via dupla que conjugue anonimato/identificação de doadores; implementação de sistemas de registo reprodutivo para receptores e doadores; limites do rastreio genético a doadores; doação por familiares/conhecidos; e o papel dos doadores na decisão quanto ao destino de embriões criopreservados e na escolha das características dos receptores dos seus gametas. Há espaço para expandir o debate e promover a pesquisa em torno das implicações sociais e éticas da doação de gametas, considerando a participação de todos os cidadãos.


Conocer la discusión en torno a los desafíos sociales y éticos de la donación de gametos es fundamental para el buen gobierno de las técnicas de reproducción asistida. En este artículo se analizan los temas que orientaron el debate en las organizaciones de ética portuguesas, discutiendo sus conexiones con los temas abordados internacionalmente. Para este fin, en marzo de 2018, investigamos sistemáticamente las páginas webs del Conselho Nacional de Procriação Medicamente Assistida y del Conselho Nacional de Ética para as Ciências da Vida. Asimismo, procedimos al análisis de contenido temático de 25 documentos. Los resultados indican que el debate se centró en la accesibilidad, anonimato y compensación de donadores y, en menor extensión, en las responsabilidades profesionales. Se observaron posicionamientos heterogéneos y tensiones entre múltiples derechos y principios éticos, asociados a receptores, a personas nacidas gracias a la donación de gametos y a donadores. Estos tienen en común tres alegaciones: la escasez de evidencias científicas; las experiencias de otros países; y las regulaciones procedentes de entidades internacionales. En el literatura se abordan temas adicionales, en particular: una vía doble que conjugue anonimato/identificación de donadores; implementación de sistemas de registro reproductivo para receptores y donadores; límites del rastreo genético a donadores; donación por familiares/conocidos; y el papel de los donadores en la decisión respecto al destino de embriones criopreservados y en la elección de las características de los receptores de sus gametos. Existe espacio para abrir más el debate y promover la investigación en torno de las implicaciones sociales y éticas de la donación de gametos, considerando la participación de todos los ciudadanos.


Subject(s)
Bioethical Issues/standards , Confidentiality/ethics , Insemination, Artificial, Heterologous/ethics , Oocyte Donation/ethics , Adult , Bioethical Issues/legislation & jurisprudence , Confidentiality/legislation & jurisprudence , Confidentiality/standards , Female , Humans , Insemination, Artificial, Heterologous/legislation & jurisprudence , Insemination, Artificial, Heterologous/standards , Male , Middle Aged , Oocyte Donation/legislation & jurisprudence , Portugal
16.
J Am Med Inform Assoc ; 26(4): 311-313, 2019 04 01.
Article in English | MEDLINE | ID: mdl-30698793

ABSTRACT

Social media use has become ubiquitous in the United States, providing unprecedented opportunities for research. However, the rapidly evolving research landscape has far outpaced federal regulations for the protection of human subjects. Recent highly publicized scandals have raised legitimate concerns in the media about how social media data are being used. These circumstances combined with the absence of ethical standards puts even the best intentioned scientists at risk of possible research misconduct. The scientific community may need to lead the charge in insuring the ethical use of social media data in scientific research. We propose 6 steps the scientific community can take to lead this charge. We underscore the important role of funding agencies and universities to create the necessary ethics infrastructure to allow social media research to flourish in a way that is pro-technology, pro-science, and most importantly, pro-humanity.


Subject(s)
Biomedical Research/ethics , Social Media/ethics , Bioethical Issues/standards , Biomedical Research/methods , Biomedical Research/standards
19.
Cad. Saúde Pública (Online) ; 35(2): e00122918, 2019. tab, graf
Article in Portuguese | LILACS | ID: biblio-989506

ABSTRACT

Resumo: Conhecer a discussão em torno dos desafios sociais e éticos da doação de gametas é fundamental para a boa governança das técnicas de reprodução assistida. Neste artigo, analisam-se os tópicos que orientaram o debate nas organizações de ética portuguesas, discutindo as suas conexões com os temas abordados internacionalmente. Para tal, em março de 2018, pesquisamos sistematicamente os websites do Conselho Nacional de Procriação Medicamente Assistida e do Conselho Nacional de Ética para as Ciências da Vida. Procedemos à análise de conteúdo temática de 25 documentos. Os resultados indicam que o debate se centrou na acessibilidade, no anonimato e na compensação de doadores e, em menor extensão, nas responsabilidades profissionais. Observaram-se posicionamentos heterogêneos e tensões entre múltiplos direitos e princípios éticos associados a receptores, a pessoas nascidas com recurso à doação de gametas e a doadores. Esses têm em comum três alegações: a escassez de evidência científica; as experiências de outros países; e regulamentações oriundas de entidades internacionais. Na literatura abordam-se tópicos adicionais, nomeadamente: uma via dupla que conjugue anonimato/identificação de doadores; implementação de sistemas de registo reprodutivo para receptores e doadores; limites do rastreio genético a doadores; doação por familiares/conhecidos; e o papel dos doadores na decisão quanto ao destino de embriões criopreservados e na escolha das características dos receptores dos seus gametas. Há espaço para expandir o debate e promover a pesquisa em torno das implicações sociais e éticas da doação de gametas, considerando a participação de todos os cidadãos.


Abstract: Awareness of the discussion surrounding the social and ethical challenges regarding gamete donation is crucial for good governance of assisted reproduction techniques. In this article, we analyze the topics that guided the debate in the Portuguese ethics organizations, discussing their connections with themes addressed internationally. To that end, in March 2018, we systematically searched the websites of the National Council of Medically Assisted Procreation and of the National Ethics Council for Life Sciences. We carried out a thematic content analysis of 25 documents. Results indicate that the debate was focused on accessibility, anonymity and donors' compensation and, to a lesser extent, on professional responsibilities. We observed heterogeneous positions and tensions between multiple rights and ethical principles associated with recipients, donor-conceived individuals and donors. These invoke three similar arguments: the scarcity of scientific evidence; experiences from other countries; and regulations from in international entities. Literature addressed additional topics, namely: a double track that combines donor anonymity/identification; the implementation of reproduction registries for recipients and donors; limits to the genetic screening of donors; donations by family members/acquaintances; and donors' role in decisions regarding the fate of cryopreserved embryos and in choosing the characteristics of recipients of their gametes. There is room to expand the debate and to promote research on the social and ethical implications of gamete donation, considering the participation of all citizens.


Resumen: Conocer la discusión en torno a los desafíos sociales y éticos de la donación de gametos es fundamental para el buen gobierno de las técnicas de reproducción asistida. En este artículo se analizan los temas que orientaron el debate en las organizaciones de ética portuguesas, discutiendo sus conexiones con los temas abordados internacionalmente. Para este fin, en marzo de 2018, investigamos sistemáticamente las páginas webs del Conselho Nacional de Procriação Medicamente Assistida y del Conselho Nacional de Ética para as Ciências da Vida. Asimismo, procedimos al análisis de contenido temático de 25 documentos. Los resultados indican que el debate se centró en la accesibilidad, anonimato y compensación de donadores y, en menor extensión, en las responsabilidades profesionales. Se observaron posicionamientos heterogéneos y tensiones entre múltiples derechos y principios éticos, asociados a receptores, a personas nacidas gracias a la donación de gametos y a donadores. Estos tienen en común tres alegaciones: la escasez de evidencias científicas; las experiencias de otros países; y las regulaciones procedentes de entidades internacionales. En el literatura se abordan temas adicionales, en particular: una vía doble que conjugue anonimato/identificación de donadores; implementación de sistemas de registro reproductivo para receptores y donadores; límites del rastreo genético a donadores; donación por familiares/conocidos; y el papel de los donadores en la decisión respecto al destino de embriones criopreservados y en la elección de las características de los receptores de sus gametos. Existe espacio para abrir más el debate y promover la investigación en torno de las implicaciones sociales y éticas de la donación de gametos, considerando la participación de todos los ciudadanos.


Subject(s)
Humans , Male , Female , Adult , Middle Aged , Oocyte Donation/ethics , Confidentiality/ethics , Bioethical Issues/standards , Insemination, Artificial, Heterologous/ethics , Portugal , Oocyte Donation/legislation & jurisprudence , Confidentiality/legislation & jurisprudence , Confidentiality/standards , Bioethical Issues/legislation & jurisprudence , Insemination, Artificial, Heterologous/legislation & jurisprudence , Insemination, Artificial, Heterologous/standards
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