Work

Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions

Year: 2021

Type: article

Study design: Observational Study

Abstract: There is a need for multimodal strategies to keep research participants informed about study results. Our aim was to characterize preferences of genomic research participants from two institutions along four dimensions of general research result updates: content, timing, mechanism, and frequency. METHODS: We conducted a web-based cross-sectional survey that was administered from 25 June 2018 to 5 December 2018. RESULTS: 397 participants completed the survey, most of whom (96%) expressed a desire to receive research updates. Preferences with high endorsement included: update content (brief descriptions of major findings, descriptions of purpose and goals, and educational material); update timing (when the research is completed, when findings are reviewed, when findings are published, and when the study status changes); update mechanism (email with updates, and email newsletter); and update frequency (every three months). Hierarchical cluster analyses based on the four update preferences identified four profiles of participants with similar preference patterns. Very few participants in the largest profile were comfortable with budgeting less money for research activities so that researchers have money to set up services to send research result updates to study participants. CONCLUSION: Future studies may benefit from exploring preferences for research result updates, as we have in our study. In addition, this work provides evidence of a need for funders to incentivize researchers to communicate results to participants.

Source: Journal of Personalized Medicine

DOI: 10.3390/jpm11050399

Authors: Casey Overby Taylor, Natalie Flaks Manov, Katherine Crew, Chunhua Weng, John J Connolly, Christopher Chute, Daniel Ford, Harold Lehmann, Alanna Rahm, Iftikhar Kullo, Pedro Caraballo, Ingrid Holm, Debra Mathews

Institutions: Johns Hopkins University, Columbia University, Children's Hospital of Philadelphia, Geisinger Health System, Mayo Clinic, Boston Children's Hospital, Harvard University, Johns Hopkins Berman Institute of Bioethics

Language: English

Topic: Ethics in Clinical Research

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

Open Access status: gold

Estimated APC paid: $1,944

Funders: Brigham and Women's Hospital, Children's Hospital of Philadelphia, Vanderbilt University, Northwestern University, Cincinnati Children's Hospital Medical Center, University of Washington, Vanderbilt University Medical Center, Broad Institute, National Human Genome Research Institute

Awards: EHR-based Genomic Discovery and Implementation, EHR-based Genomic Risk Assessment and Management for Diverse Populations, G2955879720, G2978603772, G3138126862, G3165348588, G3398273182, eMERGE IV Northwest: A partnership to evaluate the use of genomic information in the health care of diverse participants, Better Outcomes for Children: Promoting Excellence in Healthcare Genomics to Inform Policy, EMR-Linked Biobank for Translational Genomics, The Electronic Medical Records and Genomics (eMERGE) Network Phase III - Coordinating Center (U01), G4109850255, Clinical Decision Support for Unsolicited Genomic Results, G508978646, G5585626916, G5716992956, Genomic Medicine at Northwestern: Discovery and Implementation, VGER, the Vanderbilt Genome-Electronic Records Project, G6712854737, G6729976872, G6849114374, G7178731656, G7446853542, G7637536449, G7670018675, The Future of Genomics Medicine in Patient Care: Contributions from CHOP, EMERGE III CENTRAL SEQUENCING, GENOTYPING AND INTERPRETATION FACILITY, eMERGE Phase IV Clinical Center at Mass General Brigham, G8209560329, G8339788521, G8618783052, DNA Sequencing Support for the eMERGE Network

OpenAlex ID: W3162773730

FWCI: 1.297

Cites: 40

Cited by: 7

Related to: 10