Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions.
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ABSTRACT: 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.
SUBMITTER: Taylor CO
PROVIDER: S-EPMC8151672 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
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| S-EPMC8642165 | biostudies-literature
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Project description:Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasingly contend with whether--and which results--to report. We conducted a qualitative study with researchers and participants involved in autism genomics research, including 4 focus groups and 23 interviews with parents of autistic children, and 23 interviews with researchers. Respondents considered genomic research results 'reportable' when results were perceived to explain cause, and answer the question 'why;' that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed 'true.' Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as 'true' depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is 'genetic.' For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. For researchers, they suggest that result disclosure to individuals should be justified not only by perceived meaning but also by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders.
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Project description:Background:Codes of conduct mainly focus on research misconduct that takes the form of fabrication, falsification, and plagiarism. However, at the aggregate level, lesser forms of research misbehavior may be more important due to their much higher prevalence. Little is known about what the most frequent research misbehaviors are and what their impact is if they occur. Methods:A survey was conducted among 1353 attendees of international research integrity conferences. They were asked to score 60 research misbehaviors according to their views on and perceptions of the frequency of occurrence, preventability, impact on truth (validity), and impact on trust between scientists on 5-point scales. We expressed the aggregate level impact as the product of frequency scores and truth, trust and preventability scores, respectively. We ranked misbehaviors based on mean scores. Additionally, relevant demographic and professional background information was collected from participants. Results:Response was 17% of those who were sent the invitational email and 33% of those who opened it. The rankings suggest that selective reporting, selective citing, and flaws in quality assurance and mentoring are viewed as the major problems of modern research. The "deadly sins" of fabrication and falsification ranked highest on the impact on truth but low to moderate on aggregate level impact on truth, due to their low estimated frequency. Plagiarism is thought to be common but to have little impact on truth although it ranked high on aggregate level impact on trust. Conclusions:We designed a comprehensive list of 60 major and minor research misbehaviors. Our respondents were much more concerned over sloppy science than about scientific fraud (FFP). In the fostering of responsible conduct of research, we recommend to develop interventions that actively discourage the high ranking misbehaviors from our study.
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