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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

Pamela Sankar, +1 more
- 01 Jul 2017 - 
- Vol. 19, Iss: 7, pp 743-750
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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.
About: 
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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Journal ArticleDOI

Perspectives on Precision Medicine in a Tribally Managed Primary Care Setting

Julie A. Beans, +4 more
- 17 Sep 2020 - 
TL;DR: In this paper, the authors proposed to ensure ethical inclusion of all populations in precision medicine research and clinical application, and in-depth understanding of diverse communities' vie... and their challenges.
Journal ArticleDOI

Community Partnership in Precision Medicine: Themes from a Community Engagement Conference

Loretta Jones, +14 more
- 06 Sep 2018 - 
TL;DR: Conference participants expressed high willingness to participate in precision medicine studies, but discussions highlighted trust and transparency issues and suggested community partnered research with local capacity building.
Journal ArticleDOI

Attitudes toward genomics and precision medicine.

James M. DuBois, +5 more
TL;DR: The association of concerns about precision medicine activities with demographic variables such as religion and politics, as well as higher levels of education, suggests that further education on genomic and precision activities alone is unlikely to shift AGPM scores significantly.
Journal ArticleDOI

Recruitment planning for clinical trials with a vulnerable perinatal adolescent population using the Clinical Trials Transformative Initiative framework and principles of partner and community engagement.

Abigail Gamble, +6 more
- 15 Mar 2021 - 
TL;DR: In this article, the authors adopted the Clinical Trials Transformative Initiative (CTTI) framework for recruitment planning to identify and mitigate challenges to recruitment early in the clinical trial development process and developed a robust recruitment protocol that will be used in future intervention trials with an understudied perinatal adolescent population with high risk for poor maternal and fetal health outcomes.
Posted ContentDOI

Inter-population differences of allele frequency and regulome tagging are associated with the heterogeneity of loci identified by cross-ancestry genome-wide association studies

Antonella De Lillo, +8 more
- 14 Sep 2020 - 
TL;DR: The human diversity of certain GWS loci appear to be affected by local adaptation while in other cases the associations may be biased by residual population stratification.
References
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Journal ArticleDOI

Race and trust in the health care system.

L. Ebony Boulware, +6 more
- 01 Jul 2003 - 
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

Ruth R. Faden, +5 more
- 01 Jan 2013 - 
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.

Katrina Armstrong, +8 more
- 01 Feb 2013 - 
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

Katharina Kovacs Burns, +3 more
- 15 Apr 2014 - 
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

Mark A. Rothstein
- 01 Jun 2015 - 
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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