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Open AccessJournal ArticleDOI

The Precision Medicine Initiative's All of Us Research Program: an agenda for research on its ethical, legal, and social issues

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TLDR
It is concluded that PMI's All of Us Research Program represents a significant opportunity and obligation to identify, analyze, and respond to ELSI, and is called on the PMI to initiate a research program capable of taking on these challenges.
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This article is published in Genetics in Medicine.The article was published on 2017-07-01 and is currently open access. It has received 204 citations till now. The article focuses on the topics: Health care & Research program.

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Posted ContentDOI

Neural systems underlying RDoC social constructs: An activation likelihood estimation meta-analysis

TL;DR: In this article , a series of coordinate-based meta-analyses using the activation likelihood estimate (ALE) method was performed on whole-brain coordinates reported from 864 fMRI contrasts using the NiMARE Python package, revealing convergence in medial prefrontal cortex, anterior cingulate cortex, posterior cingulated cortex, temporoparietal junction, bilateral insula, amygdala, fusiform gyrus, precuneus, and thalamus.
Journal ArticleDOI

African American mothers’ attitudes towards genetic testing in the InterGEN study

TL;DR: It is demonstrated that more favorable attitudes towards genetic testing correlated with higher levels of income, even when accounting for commonly cited negative predictors such as maternal age, education, country of origin, and religion.
Posted ContentDOI

Soft Windowing Application to Improve Analysis of High-throughput Phenotyping Data

TL;DR: “soft windowing” is introduced, a methodological approach that selects a window of time that includes the most appropriate controls for analysis that is generalisable and can benefit large-scale human phenomic projects such as the UK Biobank and the All of Us resources.
Journal ArticleDOI

Healthcare Fusion: An Innovative Framework for Health Information Management

TL;DR: In this paper , a healthcare fusion framework is proposed to achieve culturally and demographically relevant outcomes in precision medicine and population health, in ways that are convincing to stakeholders and investors, in addition, the proposed framework may prove relevant in informing governmental and private sector responses to sudden public health crises.
Book ChapterDOI

Patient Registries for Clinical Research

TL;DR: This chapter describes informatics principles and approaches relevant to the design and implementation of patient registries, with emphasis on the ingestion of clinical data and the role of patient Registries in research and learning health activities.
References
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Journal ArticleDOI

Race and trust in the health care system.

TL;DR: In this paper, the authors analyzed responses to a cross-sectional telephone survey to assess the independent relationship of self-reported race (non-Hispanic black or non-Hispanic white) with trust in physicians, hospitals, and health insurance plans.
Journal ArticleDOI

An Ethics Framework for a Learning Health Care System: A Departure from Traditional Research Ethics and Clinical Ethics

TL;DR: A new ethics framework is put forward to support the transformation to a learning health care system and to help ensure that learning activities carried out within such a system are conducted in an ethically acceptable fashion.
Journal ArticleDOI

Prior experiences of racial discrimination and racial differences in health care system distrust.

TL;DR: Higher HCSD among African Americans is explained by a greater burden of experiences of racial discrimination than whites, and efforts to eliminate racial discrimination and restore trust given prior discrimination are needed.
Journal ArticleDOI

‘Practical’ resources to support patient and family engagement in healthcare decisions: a scoping review

TL;DR: This scoping review for patient/family engagement tools and guides is a good start for a resource inventory and can guide the content development of a patient engagement resource kit to be used by patients/families, healthcare providers and administrators.
Journal ArticleDOI

Ethical Issues in Big Data Health Research: Currents in Contemporary Bioethics

TL;DR: In this article, the author will cover the following issues: whether traditional research regulations should apply to Big Data health research; (2) the relationship between privacy and autonomy in Big Datahealth research; and (3) the role of informed consent in Big data health research.
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