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2.
Hist Philos Life Sci ; 43(2): 68, 2021 May 11.
Artigo em Inglês | MEDLINE | ID: mdl-33977437

RESUMO

Three interdependent factors are behind the current Covid-19 pandemic distorted narrative: (1) science´s culture of "publish or perish", (2) misinformation spread by traditional media and social digital media and (3) distrust of technology for tracing contacts and its privacy-related issues. In this short paper, I wish to tackle how these three factors have added up to give rise to a negative public understanding of science in times of a health crisis, such as the current Covid-19 pandemic and finally, how to confront all these problems.


Assuntos
Disciplinas das Ciências Biológicas/normas , Comunicação , Disseminação de Informação/ética , Comunicação Acadêmica/normas , Ciência/normas , Humanos , Meios de Comunicação de Massa , Revisão da Pesquisa por Pares , Privacidade , Opinião Pública , Mídias Sociais
6.
Nat Commun ; 12(1): 801, 2021 02 05.
Artigo em Inglês | MEDLINE | ID: mdl-33547324

RESUMO

Most trials do not release interim summaries on efficacy and toxicity of the experimental treatments being tested, with this information only released to the public after the trial has ended. While early release of clinical trial data to physicians and patients can inform enrollment decision making, it may also affect key operating characteristics of the trial, statistical validity and trial duration. We investigate the public release of early efficacy and toxicity results, during ongoing clinical studies, to better inform patients about their enrollment options. We use simulation models of phase II glioblastoma (GBM) clinical trials in which early efficacy and toxicity estimates are periodically released accordingly to a pre-specified protocol. Patients can use the reported interim efficacy and toxicity information, with the support of physicians, to decide which trial to enroll in. We describe potential effects on various operating characteristics, including the study duration, selection bias and power.


Assuntos
Antineoplásicos/uso terapêutico , Neoplasias Encefálicas/psicologia , Drogas em Investigação/uso terapêutico , Glioblastoma/psicologia , Disseminação de Informação/métodos , Modelagem Computacional Específica para o Paciente , Neoplasias Encefálicas/tratamento farmacológico , Neoplasias Encefálicas/mortalidade , Neoplasias Encefálicas/patologia , Ensaios Clínicos como Assunto , Tomada de Decisões , Glioblastoma/tratamento farmacológico , Glioblastoma/mortalidade , Glioblastoma/patologia , Humanos , Disseminação de Informação/ética , Segurança do Paciente , Seleção de Pacientes/ética , Análise de Sobrevida , Fatores de Tempo , Resultado do Tratamento
7.
J Med Internet Res ; 23(2): e25120, 2021 02 25.
Artigo em Inglês | MEDLINE | ID: mdl-33629963

RESUMO

Multisite medical data sharing is critical in modern clinical practice and medical research. The challenge is to conduct data sharing that preserves individual privacy and data utility. The shortcomings of traditional privacy-enhancing technologies mean that institutions rely upon bespoke data sharing contracts. The lengthy process and administration induced by these contracts increases the inefficiency of data sharing and may disincentivize important clinical treatment and medical research. This paper provides a synthesis between 2 novel advanced privacy-enhancing technologies-homomorphic encryption and secure multiparty computation (defined together as multiparty homomorphic encryption). These privacy-enhancing technologies provide a mathematical guarantee of privacy, with multiparty homomorphic encryption providing a performance advantage over separately using homomorphic encryption or secure multiparty computation. We argue multiparty homomorphic encryption fulfills legal requirements for medical data sharing under the European Union's General Data Protection Regulation which has set a global benchmark for data protection. Specifically, the data processed and shared using multiparty homomorphic encryption can be considered anonymized data. We explain how multiparty homomorphic encryption can reduce the reliance upon customized contractual measures between institutions. The proposed approach can accelerate the pace of medical research while offering additional incentives for health care and research institutes to employ common data interoperability standards.


Assuntos
Segurança Computacional/ética , Disseminação de Informação/ética , Privacidade/legislação & jurisprudência , Tecnologia/métodos , Humanos
9.
PLoS One ; 15(12): e0244767, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33382835

RESUMO

BACKGROUND: With the emergence of new health information technologies, health information can be shared across networks, with or without patients' awareness and/or their consent. It is often argued that there can be an ethical obligation to participate in biomedical research, motivated by altruism, particularly when risks are low. In this study, we explore whether altruism contributes to the belief that there is an ethical obligation to share information about one's health as well as how other health care experiences, perceptions, and concerns might be related to belief in such an obligation. METHODS: We conducted an online survey using the National Opinion Research Center's (NORC) probability-based, nationally representative sample of U.S. adults. Our final analytic sample included complete responses from 2069 participants. We used multivariable logistic regression to examine how altruism, together with other knowledge, attitudes, and experiences contribute to the belief in an ethical obligation to allow health information to be used for research. RESULTS: We find in multivariable regression that general altruism is associated with a higher likelihood of belief in an ethical obligation to allow one's health information to be used for research (OR = 1.22, SE = 0.14, p = 0.078). Trust in the health system and in care providers are both associated with a significantly higher likelihood of believing there is an ethical obligation to allow health information to be used (OR = 1.48, SE = 0.76, p<0.001; OR = 1.58, SE = 0.26, p<0.01, respectively). CONCLUSIONS: Belief that there is an ethical obligation to allow one's health information to be used for research is shaped by altruism and by one's experience with, and perceptions of, health care and by general concerns about the use of personal information. Altruism cannot be assumed and researchers must recognize the ways encounters with the health care system influence (un)willingness to share one's health information.


Assuntos
Altruísmo , Atitude , Disseminação de Informação/ética , Obrigações Morais , Revelação da Verdade/ética , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Motivação , Inquéritos e Questionários
10.
PLoS One ; 15(10): e0239666, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33027262

RESUMO

Individuals who encounter false information on social media may actively spread it further, by sharing or otherwise engaging with it. Much of the spread of disinformation can thus be attributed to human action. Four studies (total N = 2,634) explored the effect of message attributes (authoritativeness of source, consensus indicators), viewer characteristics (digital literacy, personality, and demographic variables) and their interaction (consistency between message and recipient beliefs) on self-reported likelihood of spreading examples of disinformation. Participants also reported whether they had shared real-world disinformation in the past. Reported likelihood of sharing was not influenced by authoritativeness of the source of the material, nor indicators of how many other people had previously engaged with it. Participants' level of digital literacy had little effect on their responses. The people reporting the greatest likelihood of sharing disinformation were those who thought it likely to be true, or who had pre-existing attitudes consistent with it. They were likely to have previous familiarity with the materials. Across the four studies, personality (lower Agreeableness and Conscientiousness, higher Extraversion and Neuroticism) and demographic variables (male gender, lower age and lower education) were weakly and inconsistently associated with self-reported likelihood of sharing. These findings have implications for strategies more or less likely to work in countering disinformation in social media.


Assuntos
Disseminação de Informação/ética , Mídias Sociais/ética , Confiança/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Previsões/métodos , Humanos , Disseminação de Informação/métodos , Masculino , Pessoa de Meia-Idade , Personalidade , Probabilidade , Autorrelato , Mídias Sociais/tendências
13.
BMJ Open ; 10(10): e040989, 2020 10 26.
Artigo em Inglês | MEDLINE | ID: mdl-33109677

RESUMO

OBJECTIVE: The spread of misinformation has accompanied the coronavirus pandemic, including topics such as immune boosting to prevent COVID-19. This study explores how immune boosting is portrayed on the internet during the COVID-19 pandemic. DESIGN: Content analysis. METHODS: We compiled a dataset of 227 webpages from Google searches in Canada and the USA using the phrase 'boost immunity' AND 'coronavirus' on 1 April 2020. We coded webpages for typology and portrayal of immune boosting and supplements. We recorded mentions of microbiome, whether the webpage was selling or advertising an immune boosting product or service, and suggested strategies for boosting immunity. RESULTS: No significant differences were found between webpages that appeared in the searches in Canada and the USA. The most common types of webpages were from news (40.5%) and commercial (24.7%) websites. The concept of immune boosting was portrayed as beneficial for avoiding COVID-19 in 85.5% of webpages and supplements were portrayed as beneficial in 40% of the webpages, but commercial sites were more likely to have these portrayals. The top immune boosting strategies were vitamin C (34.8%), diet (34.4%), sleep (34.4%), exercise (30.8%) and zinc (26.9%). Less than 10% of the webpages provide any critique of the concept of immune boosting. CONCLUSIONS: Pairing evidence-based advice for maintaining one's health (eg, healthy diet, exercise, sleep) with the phrase immune boosting and strategies lacking in evidence may inadvertently help to legitimise the concept, making it a powerful marketing tool. Results demonstrate how the spread of misinformation is complex and often more subtle than blatant fraudulent claims.


Assuntos
Comunicação , Informação de Saúde ao Consumidor , Infecções por Coronavirus , Fatores Imunológicos , Imunoterapia , Internet , Marketing , Pandemias , Pneumonia Viral , Betacoronavirus , Canadá/epidemiologia , Informação de Saúde ao Consumidor/métodos , Informação de Saúde ao Consumidor/normas , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/imunologia , Infecções por Coronavirus/prevenção & controle , Confiabilidade dos Dados , Suplementos Nutricionais/normas , Humanos , Fatores Imunológicos/normas , Fatores Imunológicos/uso terapêutico , Imunoterapia/métodos , Imunoterapia/normas , Disseminação de Informação/ética , Disseminação de Informação/métodos , Internet/estatística & dados numéricos , Internet/tendências , Marketing/ética , Marketing/métodos , Pandemias/prevenção & controle , Pneumonia Viral/epidemiologia , Pneumonia Viral/imunologia , Pneumonia Viral/prevenção & controle , Saúde Pública , Estados Unidos/epidemiologia
15.
J Am Med Inform Assoc ; 27(11): 1721-1726, 2020 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-32918447

RESUMO

Global pandemics call for large and diverse healthcare data to study various risk factors, treatment options, and disease progression patterns. Despite the enormous efforts of many large data consortium initiatives, scientific community still lacks a secure and privacy-preserving infrastructure to support auditable data sharing and facilitate automated and legally compliant federated analysis on an international scale. Existing health informatics systems do not incorporate the latest progress in modern security and federated machine learning algorithms, which are poised to offer solutions. An international group of passionate researchers came together with a joint mission to solve the problem with our finest models and tools. The SCOR Consortium has developed a ready-to-deploy secure infrastructure using world-class privacy and security technologies to reconcile the privacy/utility conflicts. We hope our effort will make a change and accelerate research in future pandemics with broad and diverse samples on an international scale.


Assuntos
Pesquisa Biomédica , Segurança Computacional , Infecções por Coronavirus , Disseminação de Informação , Pandemias , Pneumonia Viral , Privacidade , Humanos , Disseminação de Informação/ética , Internacionalidade , Aprendizado de Máquina
16.
PLoS One ; 15(9): e0239283, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32946521

RESUMO

Both sharing and using open research data have the revolutionary potentials for forwarding scientific advancement. Although previous research gives insight into researchers' drivers and inhibitors for sharing and using open research data, both these drivers and inhibitors have not yet been integrated via a thematic analysis and a theoretical argument is lacking. This study's purpose is to systematically review the literature on individual researchers' drivers and inhibitors for sharing and using open research data. This study systematically analyzed 32 open data studies (published between 2004 and 2019 inclusively) and elicited drivers plus inhibitors for both open research data sharing and use in eleven categories total that are: 'the researcher's background', 'requirements and formal obligations', 'personal drivers and intrinsic motivations', 'facilitating conditions', 'trust', 'expected performance', 'social influence and affiliation', 'effort', 'the researcher's experience and skills', 'legislation and regulation', and 'data characteristics.' This study extensively discusses these categories, along with argues how such categories and factors are connected using a thematic analysis. Also, this study discusses several opportunities for altogether applying, extending, using, and testing theories in open research data studies. With such discussions, an overview of identified categories and factors can be further applied to examine both researchers' drivers and inhibitors in different research disciplines, such as those with low rates of data sharing and use versus disciplines with high rates of data sharing plus use. What's more, this study serves as a first vital step towards developing effective incentives for both open data sharing and use behavior.


Assuntos
Pesquisa Biomédica/ética , Ética em Pesquisa , Pesquisadores/ética , Adulto , Feminino , Humanos , Disseminação de Informação/ética , Masculino , Pessoa de Meia-Idade , Publicações/ética , Confiança
17.
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
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