Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 511
Filtrar
3.
Genome Med ; 12(1): 95, 2020 11 09.
Artigo em Inglês | MEDLINE | ID: mdl-33168072

RESUMO

Genomic studies of patients with COVID-19, or exposed to it, are underway to delineate host factors associated with variability in susceptibility, infectivity, and disease severity. Here, we highlight the ethical implications-both potential benefits and harms-of genomics for clinical practice and public health in the era of COVID-19.


Assuntos
Infecções por Coronavirus/patologia , Predisposição Genética para Doença/genética , Testes Genéticos/ética , Genômica/ética , Pneumonia Viral/patologia , Saúde Pública/ética , Betacoronavirus , Tomada de Decisão Clínica/métodos , Infecções por Coronavirus/terapia , Genômica/métodos , Humanos , Pandemias , Pneumonia Viral/terapia , Saúde Pública/métodos
4.
Am J Hum Genet ; 107(4): 743-752, 2020 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-32946764

RESUMO

Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one's DNA and health data for research is relatively low, and trust in the process of data's being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our "Your DNA, Your Say" study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.


Assuntos
Genoma Humano , Genômica/ética , Disseminação de Informação/ética , Análise de Sequência de DNA/ética , Confiança/psicologia , Adulto , América , Ásia , Austrália , Europa (Continente) , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Sequenciamento de Nucleotídeos em Larga Escala , Humanos , Masculino , Saúde Pública/ética , Inquéritos e Questionários
5.
Rev. bioét. derecho ; (49): 77-91, jul. 2020.
Artigo em Espanhol | IBECS | ID: ibc-192095

RESUMO

El objetivo de este artículo es comprender cómo el CRISPR-Cas9 puede funcionar como una tecnología viable en la construcción del proyecto de parentalidad para promover el ejercicio de la libertad en el proceso de autonomía reproductiva. Sin embargo, a pesar de la posibilidad del uso en la línea germinal humana, se intentó investigar los límites y el alcance de esta percepción de libertad. Así, a través del uso de investigaciones documentales y bibliográficas, se buscaron datos sobre la viabilidad de la preservación del patrimonio genético como expresión de la diversidad en la humanidad. De esta forma, se percibió que es necesario superar pensamientos higienistas de limpiar "defectos", considerando que toda vida es digna de ser vivida


The scope of this paper was to understand how CRISPR-Cas9 can function as a viable technology in the construction of the parenting project in order to promote freedom in the process of procreative autonomy. However, regarding the possibility of its use to cause genetic manipulation in the human germline, we sought to ascertain the limits and scope of this perception of freedom. Thus, through the use of documentary and bibliographical method, data about the viability of the preservation of the genetic patrimony as an expression of the diversity in humanity was researched. Therefore, it was perceived as necessary to overcome the hygienist thoughts of cleaning up "defects", considering all life as worthy of being lived


L'objectiu del article era comprendre com CRISPR-CAS9 pot funcionar com una tecnologia viable en la construcció del projecte de parentalitat per promoure l'exercici de la llibertat en el procés d'autonomia reproductiva. No obstant això, tot I la possibilitat del seu ús en la línia germinal humana, es van intentar investigar els límits I l'abast d'aquesta percepció de llibertat. Així, a través de l'ús d'investigacions documentals I bibliogràfiques, es van buscar dades sobre la viabilitat de la preservació del patrimoni genètic com a expressió de la diversitat a la humanitat. D'aquesta manera, es va percebre que cal superar pensaments higienistes de netejar "defectes", considerant que tota vida és digna de ser viscuda


Assuntos
Humanos , Edição de Genes/ética , Proteína 9 Associada à CRISPR/genética , Bioética , Edição de Genes/legislação & jurisprudência , Direitos Humanos , Dissidências e Disputas/legislação & jurisprudência , Genoma Humano/genética , Genômica/ética , Pessoalidade
6.
Stud Health Technol Inform ; 270: 238-241, 2020 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-32570382

RESUMO

One major obstacle to developing precision medicine to its full potential is the privacy concerns related to genomic-data sharing. Even though the academic community has proposed many solutions to protect genomic privacy, these so far have not been adopted in practice, mainly due to their impact on the data utility. We introduce GenoShare, a framework that enables individual citizens to understand and quantify the risks of revealing genome-related privacy-sensitive attributes (e.g., health status, kinship, physical traits) from sharing their genomic data with (potentially untrusted) third parties. GenoShare enables informed decision-making about sharing exact genomic data, by jointly simulating genome-based inference attacks and quantifying the risk stemming from a potential data disclosure.


Assuntos
Bases de Dados Genéticas/ética , Privacidade Genética , Genômica/ética , Disseminação de Informação/ética , Consentimento Livre e Esclarecido , Confidencialidade , Revelação , Genoma , Humanos , Registro Médico Coordenado
7.
Nat Rev Genet ; 21(6): 377-384, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32251390

RESUMO

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.


Assuntos
Privacidade Genética/ética , Genômica/ética , Povos Indígenas/genética , Disseminação de Informação/ética , Acesso à Informação , Pesquisa em Genética/ética , Genoma Humano/genética , Direitos Humanos , Humanos
8.
Rev. bioét. derecho ; (48): 209-226, mar. 2020.
Artigo em Espanhol | IBECS | ID: ibc-192088

RESUMO

El Proyecto Genoma Humano ha significado un paso trascendental en la historia de la ciencia, especialmente en el ejercicio de la medicina y en el tratamiento del paciente. Sin embargo, este hito histórico también ha repercutido con intensidad en otras áreas de la sociedad, las cuales a la fecha han comenzado a mostrar los impactos en sus diversas esferas. Este trabajo intenta analizar el estado actual de esta nueva realidad bajo el prisma de cada uno de estos agentes mencionados, con especial énfasis en el nuevo concepto de "discriminación genética" que afecta a todo individuo en razón de la información codificada en su ADN


The Human Genome Project has meant a transcendental step in the history of science, especially in the practice of medicine and in patient's treatment. However, this historical milestone has also had an impact on other areas of society, which have begun to show the effects in their various spheres. This paper analyzes the current state of this new reality under the prism of each of these mentioned agents, with special emphasis on the new concept of "genetic discrimination" that affects every individual because of the information encoded in their DNA


El Projecte Genoma Humà ha significat un pas transcendental en la història de la ciència, especialment en l'exercici de la medicina I en el tractament del pacient. No obstant això, aquesta fita històrica també ha repercutit amb intensitat en altres àrees de la societat, les quals a la data han començat a mostrar els impactes en les seves diverses esferes. Aquest treball analitza l'estat actual d'aquesta nova realitat sota el prisma de cadascun d'aquests agents esmentats, amb especial èmfasi en el nou concepte de "discriminació genética" que afecta a tot individu en raó de la informació codificada en el seu ADN


Assuntos
Humanos , Projeto Genoma Humano/ética , Privacidade Genética/ética , Genômica/ética , Projeto Genoma Humano/legislação & jurisprudência , Privacidade Genética/legislação & jurisprudência , Testes Genéticos/legislação & jurisprudência , Genética Médica/classificação , Genética Médica/ética , Achados Incidentais
9.
Am J Nurs ; 120(3): 14, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32079781

RESUMO

One study's pediatric protocol sparks ethical debate.


Assuntos
Revelação/ética , Genômica/ética , Predisposição Genética para Doença , Humanos , Programas de Rastreamento/ética
10.
BMC Med Ethics ; 21(1): 9, 2020 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-32000764

RESUMO

BACKGROUND: Incidental findings (IFs) and secondary findings (SFs), being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Arguments for reporting these results or not doing so typically relate to the principles of autonomy, non-maleficence and beneficence. However, these principles frequently conflict and are insufficient by themselves to come to a conclusion. This study investigates empirically how ethical principles are considered when actually reporting IFs or SFs and how value conflicts are weighed. METHODS: A qualitative focus group study has been undertaken, including a multidisciplinary group of professionals from Belgian centres for medical genetics. The data were analysed thematically. RESULTS: All eight Belgian centres participated in this study. Ethical values were frequently referred to for disclosure policies on IFs and SFs. Participants invoked respect for patient autonomy to support the disclosure of IFs and opt-out options for IFs and SFs, non-maleficence for the professional delineation of reportable IFs and opt-out options for IFs and SFs and (the particular scope of) beneficence for the mandatory reporting of actionable IFs, the delineation of reportable IFs and a current decline of actively pursued SFs. Professional assumptions about patients' genetic literacy were an important factor in the weighing of values. CONCLUSIONS: In line with the traditional bioethical discourse, the mandatory reporting of actionable IFs might be interpreted as a "technological, soft paternalism". Restricting patients' choices might be acceptable, but then its motives should be valid and its beneficent outcomes highly plausible. Hence, the presuppositions of technological, soft paternalism - patients' inability to make informed decisions, normative rationality, the efficacy of beneficent outcomes and the delineated spectrum of beneficence - should be approached critically. Moreover, distributive justice should be considered an important value in the delineation of the current scope of the ethical debate on IFs and SFs. This study of guiding values may stimulate the debate on the ethical grounds for a solid policy on IFs and SFs internationally.


Assuntos
Atitude do Pessoal de Saúde , Revelação/ética , Genômica/ética , Bélgica , Grupos Focais , Humanos , Achados Incidentais , Entrevistas como Assunto , Autonomia Pessoal , Pesquisa Qualitativa
12.
BMC Med Ethics ; 21(1): 7, 2020 01 16.
Artigo em Inglês | MEDLINE | ID: mdl-31948449

RESUMO

BACKGROUND: As Next Generation Sequencing technologies are increasingly implemented in biomedical research and (translational) care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. METHODS: In a first step we clarify some central concepts such as "raw data"; in a second step we sketch the international legal framework. The third step provides an extensive ethical analysis which comprehends two parts: an evaluation of whether there is a prima facie moral right to receive one's raw data, and a contextualization and discussion of the right in light of potentially conflicting interests and rights of the data subject herself and third parties; in a last fourth step we emphasize the main practical consequences of the ethical analyses and propose recommendations for the release of raw data. RESULTS: In several legislations like the new European General Data Protection Regulation, patients do in principle have the right to receive their raw data. However, the procedural implementation of this right and whether it involves genetic counselling is at the discretion of the Member States. Even more questions remain with respect to the research context. The ethical analysis suggests that patients and research subjects have a moral right to receive their genomic raw data and addresses aspects which are also of relevance for the legal discussion such as the costs of release of raw data and its impact on academic freedom. CONCLUSION: Taking into account the specific nature and implications of genomic raw data and the contexts of research and health care, several concerns and potentially conflicting interests of the data subjects themselves and involved researchers, physicians, biomedical institutions and relatives arise. Instead of using them to argue in favor of restrictions of the data subjects' legal and moral right to genomic raw data, the concerns should be addressed through provision of information and other measures. To this end, we propose relevant recommendations.


Assuntos
Privacidade Genética/ética , Privacidade Genética/legislação & jurisprudência , Pesquisa em Genética/ética , Pesquisa em Genética/legislação & jurisprudência , Genômica/ética , Pacientes , Sujeitos da Pesquisa , Confidencialidade/ética , Confidencialidade/legislação & jurisprudência , Análise Ética , Europa (Continente) , Humanos , Consentimento Livre e Esclarecido/ética , Consentimento Livre e Esclarecido/legislação & jurisprudência , Pesquisadores/ética
13.
Am J Phys Anthropol ; 171(2): 177-181, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31643083

RESUMO

The metabolome is a system of small biomolecules (metabolites) and a direct result of human bioculture. Consequently, metabolomics is well poised to impact anthropological and biomedical research for the foreseeable future. Overall, we provide a perspective on the ethical, legal, and social implications (ELSI) of metabolomics, which we argue are often more alarming than those of genomics. Given the current mechanisms to fund research, ELSI beyond human DNA is stifled and in need of considerable attention.


Assuntos
Genômica , Metaboloma , Genômica/ética , Genômica/legislação & jurisprudência , Genômica/normas , Humanos
14.
Nurs Ethics ; 27(1): 77-87, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31032700

RESUMO

This article explores emerging ethical questions that result from knowledge development in a complex, technological age. Nursing practice is at a critical ideological and ethical precipice where decision-making is enhanced and burdened by new ways of knowing that include artificial intelligence, algorithms, Big Data, genetics and genomics, neuroscience, and technological innovation. On the positive side is the new understanding provided by large data sets; the quick and efficient reduction of data into useable pieces; the replacement of redundant human tasks by machines, error reduction, pattern recognition, and so forth. However, these innovations require skepticism and critique from a profession whose mission is to care for and protect patients. The promise of technology and the new biological sciences to radically and positively transform healthcare may seem compelling when couched in terms of safety, efficiency, and effectiveness but their role in the provision of ethical nursing care remains uncertain. Given the profound moral and clinical implications of how today's knowledge is developed and utilized, it is time to reconsider the relationship between ethics and knowledge development in this new uncharted area.


Assuntos
Algoritmos , Inteligência Artificial/ética , Big Data , Tecnologia Biomédica/ética , Ética em Enfermagem , Cuidados de Enfermagem/ética , Inteligência Artificial/tendências , Tecnologia Biomédica/tendências , Genética/ética , Genômica/ética , Humanos , Invenções/ética , Invenções/tendências , Conhecimento , Neurociências/ética , Pensamento
15.
BMC Med Ethics ; 20(1): 84, 2019 11 21.
Artigo em Inglês | MEDLINE | ID: mdl-31752834

RESUMO

BACKGROUND: Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger-and also more likely to conflict with those of institution-based researchers and other stakeholders-as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. METHODS: We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants' access to and control over research outputs. RESULTS: This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants' access to research outputs, including datasets and published findings, none supported participants' control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. CONCLUSIONS: There are opportunities for citizen science initiatives to incorporate more features that support participants' access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities.


Assuntos
Ciência do Cidadão/ética , Pesquisa em Genética/ética , Genômica/ética , Propriedade/ética , Testes Genéticos/ética , Humanos , Propriedade Intelectual , Políticas
17.
J Health Care Poor Underserved ; 30(4S): 21-26, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31735714

RESUMO

"Changing the conversation" around genomic research with U.S. tribal communities may lead to new pathways to address persistent health disparities. Restoring trustworthiness between researchers and communities entails a willingness to listen to Indigenous voices, being flexible, and refining existing policies and frameworks to adapt to communities' needs.


Assuntos
/genética , Genômica/ética , Genômica/métodos , Disparidades nos Níveis de Saúde , Índios Norte-Americanos/genética , Participação da Comunidade/métodos , Competência Cultural , Meio Ambiente , Comitês de Ética em Pesquisa/organização & administração , Ética em Pesquisa , Humanos , Liderança , Estados Unidos
20.
CRISPR J ; 2(5): 272-279, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31599680

RESUMO

In 2018, Dr. He Jiankui reported that he had edited human embryos and transferred them to a woman, causing her to give birth to twin girls with modified genomes. An international group of scientists and ethicists responded by proposing a global moratorium on heritable genome editing (HGE). In this article, I oppose this proposal on several grounds. A global moratorium might encourage participating nations to ban HGE or postpone access to it indefinitely. It might also deter or delay basic research that could lead to safe and effective HGE. Lastly, a global moratorium might induce participating nations to adopt or maintain laws and regulations that stigmatize children born with modified genomes. As an alternative, I argue that nations should regulate HGE for safety and efficacy only and without distinguishing between therapeutic and enhancing modifications.


Assuntos
Edição de Genes/ética , Engenharia Genética/ética , Engenharia Genética/legislação & jurisprudência , Sistemas CRISPR-Cas , Edição de Genes/legislação & jurisprudência , Genoma , Genoma Humano/genética , Genômica/ética , Genômica/legislação & jurisprudência , Células Germinativas/metabolismo , Células Germinativas/fisiologia , Governo , Humanos
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...