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1.
Genet Med ; 2021 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-33649579

RESUMO

From its earliest days, the field of human genetics has had a complex, and at times troubling, connection with racist ideologies. Although the modern field of human genetics and genomics has come a long way from those earlier errors, systemic racism remains ingrained in its institutions and practices. Although a variety of efforts are needed to excise systemic racism, we focus in this commentary on the work that must be done in scientific publishing in genetics and genomics. We propose eight principles that are both scientifically grounded and antiracist that we hope will serve as a foundation for the development of policies by publishers and editorial boards that address the unique needs of the field of genetics and genomics. Publishers and journals must go beyond mere policies, however. Editors and reviewers will need training on these policies and principles, and will benefit from resources like rubrics that can be used for evaluating the adherence of submissions to these guidelines.

3.
Health Promot Int ; 2021 Feb 13.
Artigo em Inglês | MEDLINE | ID: mdl-33582752

RESUMO

Precision mental health holds great potential for revolutionizing care and reducing the burden of mental illness. All races and ethnicities such as Asian Americans, the fastest growing racial group in the United States (U.S.), need to be engaged in precision mental health research. Owing to its global popularity, Korean drama ('K-drama') television shows may be an effective educational tool to increase precision mental health knowledge, attitudes and behaviors among Asian Americans. This qualitative study examined the participants' perspectives about and acceptance of using K-dramas to educate and engage Asian Americans about precision mental health. Twelve workshops were conducted in English, Vietnamese and Korean with a convenience sample in the San Francisco Bay Area in the U.S. (n = 122). Discussions were coded for themes. Findings revealed that all language groups reported positive reactions to using K-dramas to learn about precision health, genetics and mental health. Overall, participants shared that they learned about topics that are not generally talked about (e.g. precision health; genetic testing; mental health), from other people's perspectives, and the importance of mental health. Participants expressed how much they enjoyed the workshop, how they felt relieved due to the workshop, thought the workshop was interesting, and had an opportunity for self-reflection/healing. This pilot test demonstrated that K-dramas has promise to be used as a health educational tool in a workshop format focused on mental health among a diverse group of Asian Americans. Given the widespread access to K-dramas, they present a scalable opportunity for increasing awareness about specific health topics.

4.
Lancet Digit Health ; 3(2): e115-e123, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33358138

RESUMO

Ambient intelligence is increasingly finding applications in health-care settings, such as helping to ensure clinician and patient safety by monitoring staff compliance with clinical best practices or relieving staff of burdensome documentation tasks. Ambient intelligence involves using contactless sensors and contact-based wearable devices embedded in health-care settings to collect data (eg, imaging data of physical spaces, audio data, or body temperature), coupled with machine learning algorithms to efficiently and effectively interpret these data. Despite the promise of ambient intelligence to improve quality of care, the continuous collection of large amounts of sensor data in health-care settings presents ethical challenges, particularly in terms of privacy, data management, bias and fairness, and informed consent. Navigating these ethical issues is crucial not only for the success of individual uses, but for acceptance of the field as a whole.

5.
Hastings Cent Rep ; 50(3): 43-46, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32596893

RESUMO

Digital contact tracing, in combination with widespread testing, has been a focal point for many plans to "reopen" economies while containing the spread of Covid-19. Most digital contact tracing projects in the United States and Europe have prioritized privacy protections in the form of local storage of data on smartphones and the deidentification of information. However, in the prioritization of privacy in this narrow form, there is not sufficient attention given to weighing ethical trade-offs within the context of a public health pandemic or to the need to evaluate safety and effectiveness of software-based technology applied to public health.


Assuntos
Busca de Comunicante/ética , Busca de Comunicante/métodos , Infecções por Coronavirus/epidemiologia , Pneumonia Viral/epidemiologia , Privacidade , Smartphone/ética , Betacoronavirus , Humanos , Aplicativos Móveis , Pandemias , Saúde Pública , Medição de Risco
7.
Artigo em Inglês | MEDLINE | ID: mdl-31570382

RESUMO

Informed consent, the process of gathering autonomous authorization for a medical intervention or medical research participation, is a fundamental component of medical practice. Medical informed consent assumes decision-making capacity, voluntariness, comprehension, and adequate information. The increasing use of genetic testing, particularly genomic sequencing, in clinical and research settings has presented many new challenges for clinicians and researchers when obtaining informed consent. Many of these challenges revolve around the need for patient comprehension of sufficient information. Genomic sequencing is complex-all of the possible results are too numerous to explain, and many of the risks and benefits remain unknown. Thus, historical standards of consent are difficult to apply. Alternative models of consent have been proposed to increase patient understanding, and several have empirically demonstrated effectiveness. However, there is still a striking lack of consensus in the genetics community about what constitutes informed consent in the context of genomic sequencing. Multiple approaches are needed to address this challenge, including consensus building around standards, targeted use of genetic counselors in nongenetics clinics in which genomic testing is ordered, and the development and testing of alternative models for obtaining informed consent.

8.
Artigo em Inglês | MEDLINE | ID: mdl-31216626

RESUMO

Precision mental health (MH) holds great potential for revolutionizing MH care and reducing the burden of mental illness. Efforts to engage Asian Americans in precision MH research is necessary to help reduce MH disparities. Korean drama ("K-drama") television shows may be an effective educational tool to increase precision MH knowledge, attitudes, and behaviors (KAB) among Asian Americans. This study determined whether KAB improved after participating in a K-drama precision MH workshop, and examined the participants' perspectives about K-dramas' utility as an educational tool. A K-drama precision MH workshop in English/Vietnamese/Korean was conducted with a convenience sample (n = 122). Pre-/post-tests on precision MH KAB (genetics and genetic testing, and MH and help-seeking) and a survey on K-dramas' utility as an educational tool were administered. Findings revealed a significant difference in the pre- and post-test KAB scores overall, by genetics and genetic testing, and by MH and help-seeking. There were also significant increases in the overall post-test KAB scores by workshop (language) participation. Overall, participants responded positively on the utility of K-dramas as a precision MH educational tool. This study demonstrates the feasibility of K-drama as an innovative and widely available health education tool to educate communities about precision MH.


Assuntos
Drama , Educação em Saúde , Saúde Mental , Televisão , Adulto , Idoso , Americanos Asiáticos , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Transtornos Mentais , Pessoa de Meia-Idade , Projetos Piloto , República da Coreia , Inquéritos e Questionários
9.
Sci Data ; 6(1): 24, 2019 04 11.
Artigo em Inglês | MEDLINE | ID: mdl-30975992

RESUMO

Studies have established the importance of physical activity and fitness for long-term cardiovascular health, yet limited data exist on the association between objective, real-world large-scale physical activity patterns, fitness, sleep, and cardiovascular health primarily due to difficulties in collecting such datasets. We present data from the MyHeart Counts Cardiovascular Health Study, wherein participants contributed data via an iPhone application built using Apple's ResearchKit framework and consented to make this data available freely for further research applications. In this smartphone-based study of cardiovascular health, participants recorded daily physical activity, completed health questionnaires, and performed a 6-minute walk fitness test. Data from English-speaking participants aged 18 years or older with a US-registered iPhone who agreed to share their data broadly and who enrolled between the study's launch and the time of the data freeze for this data release (March 10 2015-October 28 2015) are now available for further research. It is anticipated that releasing this large-scale collection of real-world physical activity, fitness, sleep, and cardiovascular health data will enable the research community to work collaboratively towards improving our understanding of the relationship between cardiovascular indicators, lifestyle, and overall health, as well as inform mobile health research best practices.


Assuntos
Sistema Cardiovascular , Exercício Físico , Sono , Adulto , Glicemia/análise , Pressão Sanguínea , Sistema Cardiovascular/metabolismo , Sistema Cardiovascular/fisiopatologia , Humanos , Smartphone , Inquéritos e Questionários , Telemedicina
10.
Genet Med ; 21(1): 107-113, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-29887604

RESUMO

PURPOSE: To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections. METHODS: We conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian, and non-Hispanic white on the collection of biospecimens and EHR data for research. RESULTS: Our study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data. CONCLUSION: Considering that the potential misuse of EHR data is as great as, if not greater than, for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives, and misconceptions about sources of patient information to build trust in research relationships.


Assuntos
Bancos de Espécimes Biológicos/ética , Pesquisa Biomédica/tendências , Registros Eletrônicos de Saúde/ética , Medicina de Precisão/ética , Pesquisa Biomédica/ética , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Disseminação de Informação , Privacidade , Pesquisadores , Inquéritos e Questionários
11.
Genet Med ; 21(3): 727-735, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-29976988

RESUMO

PURPOSE: In response to genetic testing being widely ordered by nongenetics clinicians, the Consent and Disclosure Recommendations (CADRe) Workgroup of the Clinical Genome Resource (ClinGen; clinicalgenome.org ) developed guidance to facilitate communication about genetic testing and efficiently improve the patient experience. Considering ethical, legal, and social implications, and medical factors, CADRe developed and pilot tested two rubrics addressing consent for genetic testing and results disclosure. The CADRe rubrics allow for adjusting the communication approach based on circumstances specific to patients and ordering clinicians. METHODS: We present results of a formative survey of 66 genetics clinicians to assess the consent rubric for nine genes (MLH1, CDH1, TP53, GJB2, OTC; DMD, HTT, and CYP2C9/VKORC1). We also conducted interviews and focus groups with family and patient stakeholders (N = 18), nongenetics specialists (N = 27), and genetics clinicians (N = 32) on both rubrics. RESULTS: Formative evaluation of the CADRe rubrics suggests key factors on which to make decisions about consent and disclosure discussions for a "typical" patient. CONCLUSION: We propose that the CADRe rubrics include the primary issues necessary to guide communication recommendations, and are ready for pilot testing by nongenetics clinicians. Consultation with genetics clinicians can be targeted toward more complex or intensive consent and disclosure counseling.


Assuntos
Revelação/ética , Aconselhamento Genético/métodos , Pessoal de Saúde/educação , Adulto , Competência Clínica , Comunicação , Confidencialidade , Tomada de Decisões/ética , Feminino , Aconselhamento Genético/normas , Testes Genéticos/ética , Genética/educação , Humanos , Consentimento Livre e Esclarecido/normas , Idioma , Masculino , Estudantes
13.
Am J Bioeth ; 18(4): 3-20, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29621457

RESUMO

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: (1) Address the role of history and experience on trust, (2) engage concerns about potential group harm, (3) address cultural values and communication barriers, and (4) integrate patient values and expectations into oversight and governance structures.


Assuntos
Bancos de Espécimes Biológicos , Pesquisa Biomédica , Relações Comunidade-Instituição , Coleta de Dados , Seleção de Pacientes , Medicina de Precisão , Confiança , Pesquisa Biomédica/ética , Comunicação , Grupos de Populações Continentais , Ética em Pesquisa , Grupos Étnicos , Grupos Focais , Pesquisa em Genética , Humanos , Consentimento Livre e Esclarecido , Participação do Paciente , Pesquisadores , Características de Residência , Respeito
15.
Am J Bioeth ; 18(1): 39-45, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-29313771

RESUMO

The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards (IRBs), to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation (REC) services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to highlight four contexts in which REC can be a valuable resource. REC assists: 1) investigators before and after the regulatory review; 2) investigators, IRBs, and other research administrators facing challenging and novel ethical issues; 3) IRBs and investigators with the increasing challenges of informed consent and risk/benefit analysis; and 4) in providing flexible and collaborative assistance to overcome study hurdles, mediate conflicts within a team, or directly engage with research participants. Institutions that have established, or plan to establish, REC services should work to raise the visibility of their service and engage in open communication with existing clinical ethics consult services as well as the IRB. While the IRB system remains the foundation for the ethical review of research, REC can be a valuable service for investigators, regulators, and research participants aligned with the goal of supporting ethical research.


Assuntos
Pesquisa Biomédica/ética , Consultoria Ética , Comitês de Ética em Pesquisa , Consentimento Livre e Esclarecido , Sujeitos da Pesquisa , Estados Unidos
16.
Artigo em Inglês | MEDLINE | ID: mdl-31211249

RESUMO

Digital phenotyping uses smartphone and wearable signals to measure cognition, mood, and behavior. This promising new approach has been developed as an objective, passive assessment tool for the diagnosis and treatment of mental illness. Digital phenotyping is currently used with informed consent in research studies but is expected to expand to broader uses in healthcare and direct-to-consumer applications. Digital phenotyping could involve the collection of massive amounts of individual data and potential creation of new categories of health and risk assessment data. Because existing ethical and regulatory frameworks for the provision of mental healthcare do not clearly apply to digital phenotyping, it is critical to consider its possible ethical, legal, and social implications. This paper addresses four major areas where guidelines and best practices will be helpful: transparency, informed consent, privacy, and accountability. It will be important to consider these issues early in the development of this new approach so that its promise is not limited by harmful effects or unintended consequences.

20.
Clin Trials ; 14(1): 94-102, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27625314

RESUMO

BACKGROUND/AIMS: Participant understanding is a key element of informed consent for enrollment in research. However, participants often do not understand the nature, risks, benefits, or design of the studies in which they take part. Research on medical practices, which studies standard interventions rather than new treatments, has the potential to be especially confusing to participants because it is embedded within usual clinical care. Our objective in this randomized study was to compare the ability of a range of multimedia informational aids to improve participant understanding in the context of research on medical practices. METHODS: We administered a web-based survey to members of a proprietary online panel sample selected to match national US demographics. Respondents were randomized to one of five arms: four content-equivalent informational aids (animated videos, slideshows with voice-over, comics, and text) and one no-intervention control. We measured knowledge of research on medical practices using a summary knowledge score from 10 questions based on the content of the informational aids. We used analysis of variance and paired t-tests to compare knowledge scores between arms. RESULTS: There were 1500 completed surveys (300 in each arm). Mean knowledge scores were highest for the slideshows with voice-over (65.7%), followed by the animated videos (62.7%), comics (60.7%), text (57.2%), and control (50.3%). Differences between arms were statistically significant except between the slideshows with voice-over and animated videos and between the animated videos and comics. Informational aids that included an audio component (animated videos and slideshows with voice-over) had higher knowledge scores than those without an audio component (64.2% vs 59.0%, p < .0001). There was no difference between informational aids with a character-driven story component (animated videos and comics) and those without. CONCLUSION: Our results show that simple multimedia aids that use a dual-channel approach, such as voice-over with visual reinforcement, can improve participant knowledge more effectively than text alone. However, the relatively low knowledge scores suggest that targeted informational aids may be needed to teach some particularly challenging concepts. Nonetheless, our results demonstrate the potential to improve informed consent for research on medical practices using multimedia aids that include simplified language and visual metaphors.


Assuntos
Pesquisa Biomédica , Conhecimentos, Atitudes e Prática em Saúde , Consentimento Livre e Esclarecido , Multimídia , Educação de Pacientes como Assunto/métodos , Adulto , Pesquisa Comparativa da Efetividade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ensaios Clínicos Pragmáticos como Assunto , Inquéritos e Questionários , Gravação em Vídeo
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