Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars’ Dissemination Practices and Translation Goals

AJOB Empirical Bioethics 15 (2):147-153 (2024)
  Copy   BIBTEX

Abstract

Background Researchers engaged in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics are often publicly funded and intend their work to be in the public interest. These features of U.S. ELSI research create an imperative for these scholars to demonstrate the public utility of their work and the expectation that they engage in research that has potential to inform policy or practice outcomes. In support of the fulfillment of this “translational mandate,” the Center for ELSI Resources and Analysis (CERA), funded by the National Human Genome Research Institute (NHGRI), aims to facilitate community-informed, ELSI research results synthesis and dissemination. However, little is known about how ELSI research scholars define the goals of translation and imagine the intended users of their research findings.Methodology We distributed a Qualtrics survey to ELSI scholars that aimed to determine: (1) researchers’ expectations for their research findings in relation to policy or practice outcomes, (2) the stakeholder groups researchers believe could benefit from their research findings, and (3) the methods researchers use to foster the uptake of their findings by those stakeholders.Results Most ELSI researchers surveyed thought there were stakeholders that could benefit from their research findings, including health care professionals, at-risk individuals, patients, and their family members, policy-makers, and researchers/scientists, and expected their research findings to inform the creation or revision of laws, policies, or practice guidelines. Most researchers planned to disseminate findings directly to relevant stakeholders, with fewer expecting dissemination support from research funders, universities, or other entities.Conclusion The broad range of research topics, disciplines, and set of potential end users represented in ELSI reseach complicate the work of a knowledge broker. Nonetheless, the CERA can play an important role in disseminating ELSI results to relevant stakeholders. Further research should explore outreach mechanisms.

Other Versions

No versions found

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 107,589

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Funding and Forums for ELSI Research: Who (or What) Is Setting the Agenda?Clair Morrissey & Rebecca Walker - 2012 - American Journal of Bioethics Primary Research 3 (3):41-50.

Analytics

Added to PP
2024-05-29

Downloads
21 (#1,182,677)

6 months
8 (#751,358)

Historical graph of downloads
How can I increase my downloads?

Author's Profile

References found in this work

No references found.

Add more references