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Journal Articles

Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants

Open Access
Subject Area:
Genetics , Public Health
Megan B. Raymond, Kayla E. Cooper, Lisa S. Parker, Vence L. Bonham
Journal: Public Health Genomics
Public Health Genomics (2021) 24 (5-6): 241–252.
https://doi.org/10.1159/000516782
Published Online: 06 July 2021
..., underinsured, or facing barriers to act upon the results returned. This study evaluates current policies and practices surrounding return of results (RoR) to LRRP, as well as the attitudes of investigators toward providing ancillary care to LRRP. Methods: A semi-structured interview study was conducted...
View articletitled, Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants
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Journal Articles

In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research

Available to Purchase
Subject Area:
Topic Article Package: Moksha , Genetics , Public Health
Maya Sabatello, Yuan Zhang, Ying Chen, Paul S. Appelbaum
Journal: Public Health Genomics
Public Health Genomics (2020) 23 (1-2): 42–53.
https://doi.org/10.1159/000506599
Published Online: 15 April 2020
...Maya Sabatello; Yuan Zhang; Ying Chen; Paul S. Appelbaum Purpose: Returning genetic results to research participants is gaining momentum in the USA. It is believed to be an important step in exploring the impact of efforts to translate findings from research to bedside and public health benefits...
View articletitled, In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research
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Journal Articles

Return of Research-Related Genetic Test Results and Genetic Discrimination Concerns: Facilitators and Barriers of Genetic Research Participation in Diverse Groups

Available to Purchase
Subject Area:
Genetics , Public Health
Andrea N. Burnett-Hartman, Erica Blum-Barnett, Nikki M. Carroll, Sarah D. Madrid, Cabell Jonas, Kristen Janes, Monica Alvarado, Ruth Bedoy, Valerie Paolino, Nazneen Aziz, Elizabeth A. McGlynn
Journal: Public Health Genomics
Public Health Genomics (2020) 23 (1-2): 59–68.
https://doi.org/10.1159/000507056
Published Online: 14 April 2020
... biobank (KP Research Bank). We used logistic regression to calculate adjusted odds ratios (ORs) and 95% confidence intervals (CIs) comparing the willingness to participate in genetic research under different return of results scenarios and genetic discrimination concerns between groups, according...
View articletitled, Return of Research-Related Genetic Test Results and Genetic Discrimination Concerns: Facilitators and Barriers of Genetic Research Participation in Diverse Groups
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Journal Articles

Developing a Process for Returning Medically Actionable Genomic Variants to Latino Patients in a Federally Qualified Health Center

Available to Purchase
Subject Area:
Genetics , Public Health
Gabriel Q. Shaibi, Iftikhar J. Kullo, Davinder P. Singh, Richard R. Sharp, Eleanna De Filippis, Idali Cuellar, Valentina Hernandez, Sharon Levey, Carmen Radecki Breitkopf, Janet E. Olson, James R. Cerhan, Lawrence J. Mandarino, Stephen N. Thibodeau, Noralane M. Lindor
Journal: Public Health Genomics
Public Health Genomics (2019) 21 (1-2): 77–84.
https://doi.org/10.1159/000494488
Published Online: 06 December 2018
... in a gene and deemed to be medically actionable. The first step in returning these results was to develop a patient profile through a medical chart review to check for potential relative contraindications or complications (e.g., recent suicide attempt, diagnosis of terminal cancer, other) for returning...
View articletitled, Developing a Process for Returning Medically Actionable Genomic Variants to Latino Patients in a Federally Qualified Health Center
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Journal Articles

Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants’ Genomic Results

Available to Purchase
Subject Area:
Genetics , Public Health
Karen L. Edwards, Deborah Goodman, Catherine O. Johnson, Lari Wenzel, Celeste Condit, Deborah Bowen
Journal: Public Health Genomics
Public Health Genomics (2019) 21 (1-2): 18–26.
https://doi.org/10.1159/000490235
Published Online: 18 September 2018
... susceptibility to a particular disease, such as cancer, and their response to a specific treatment [ 1, 2 ]. Genomic information is the foundation that will drive discoveries critical for the success of both of these national programs. Return of results Genomics Cancer Research participant perspective...
View articletitled, Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants’ Genomic Results
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Journal Articles

Views of Cohort Study Participants about Returning Research Results in the Context of Precision Medicine

Available to Purchase
Subject Area:
Genetics , Public Health
Travis Hyams, Deborah J. Bowen, Celeste Condit, Jeremy Grossman, Megan Fitzmaurice, Deborah Goodman, Lari Wenzel, Karen L. Edwards
Journal: Public Health Genomics
Public Health Genomics (2016) 19 (5): 269–275.
https://doi.org/10.1159/000448277
Published Online: 24 August 2016
... to in the content or advertisements. Biorepository Genetics Qualitative focus Precision medicine Biobank Cancer Return of results Ethics National Institutes of Health (NIH) 10.13039/100000002 Collecting and storingtissue and genetic data in large repositories represents a powerful...
View articletitled, Views of Cohort Study Participants about Returning Research Results in the Context of Precision Medicine
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Journal Articles

Public Perceptions of Disease Severity but Not Actionability Correlate with Interest in Receiving Genomic Results: Nonalignment with Current Trends in Practice

Open Access
Subject Area:
Genetics , Public Health
Kristi D. Graves, Pamela S. Sinicrope, Jennifer B. McCormick, Yingjun Zhou, Susan T. Vadaparampil, Noralane M. Lindor
Journal: Public Health Genomics
Public Health Genomics (2015) 18 (3): 173–183.
https://doi.org/10.1159/000375479
Published Online: 12 March 2015
.... Actionability Genomics Public perceptions Return of results Severity The practice of genetic medicine continues to shift from consultations focused on one or a few genes for a single disorder to a simultaneous consideration of multiple genes for multiple disorders. New sequencing technologies...
View articletitled, Public Perceptions of Disease Severity but Not Actionability Correlate with Interest in Receiving Genomic Results: Nonalignment with Current Trends in Practice
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