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Article

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

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Department of Medicine, Department of Biomedical Engineering, and The Institute for Computational Medicine, Johns Hopkins University, Baltimore, MD 21205, USA
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Department of Medicine, Johns Hopkins University, Baltimore, MD 21205, USA
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Department of Medicine and Epidemiology, Columbia University, New York, NY 10032, USA
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Department of Biomedical Informatics, Columbia University, New York, NY 10032, USA
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Center for Applied Genomics, Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
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Schools of Medicine, Public Health, and Nursing, Johns Hopkins University, Baltimore, MD 21205, USA
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Department of Medicine, Division of Health Sciences Informatics, Johns Hopkins University, Baltimore, MD 21205, USA
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Genomic Medicine Institute, Geisinger, Danville, PA 17822, USA
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Department of Cardiovascular Medicine, Mayo Clinic, Rochester, MN 55905, USA
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Department of Medicine, Mayo Clinic, Rochester, MN 55905, USA
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Division of Genetics and Genomics, Boston Children’s Hospital and Department of Pediatrics, Harvard Medical School, Boston, MA 02115, USA
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Johns Hopkins University Berman Institute of Bioethics, Baltimore, MD 21205, USA
*
Author to whom correspondence should be addressed.
These authors contributed equally to the work.
Academic Editor: Nadeem Qureshi
J. Pers. Med. 2021, 11(5), 399; https://doi.org/10.3390/jpm11050399
Received: 10 April 2021 / Revised: 23 April 2021 / Accepted: 3 May 2021 / Published: 11 May 2021
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. View Full-Text
Keywords: study participation; communication; survey; general research results study participation; communication; survey; general research results
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MDPI and ACS Style

Taylor, C.O.; Manov, N.F.; Crew, K.D.; Weng, C.; Connolly, J.J.; Chute, C.G.; Ford, D.E.; Lehmann, H.; Rahm, A.K.; Kullo, I.J.; Caraballo, P.J.; Holm, I.A.; Mathews, D. Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions. J. Pers. Med. 2021, 11, 399. https://doi.org/10.3390/jpm11050399

AMA Style

Taylor CO, Manov NF, Crew KD, Weng C, Connolly JJ, Chute CG, Ford DE, Lehmann H, Rahm AK, Kullo IJ, Caraballo PJ, Holm IA, Mathews D. Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions. Journal of Personalized Medicine. 2021; 11(5):399. https://doi.org/10.3390/jpm11050399

Chicago/Turabian Style

Taylor, Casey O.; Manov, Natalie F.; Crew, Katherine D.; Weng, Chunhua; Connolly, John J.; Chute, Christopher G.; Ford, Daniel E.; Lehmann, Harold; Rahm, Alanna K.; Kullo, Iftikhar J.; Caraballo, Pedro J.; Holm, Ingrid A.; Mathews, Debra. 2021. "Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions" J. Pers. Med. 11, no. 5: 399. https://doi.org/10.3390/jpm11050399

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