Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2012 Jan 1;3(3):51-60.
doi: 10.1080/21507716.2012.678550. Epub 2012 Jun 19.

Funding and Forums for ELSI Research: Who (or What) is Setting the Agenda?

Clair Morrissey  1 , Rebecca L Walker
Affiliations

Funding and Forums for ELSI Research: Who (or What) is Setting the Agenda?

Clair Morrissey et al. AJOB Prim Res. .

Abstract

BACKGROUND: Discussion of the influence of money on bioethics research seems particularly salient in the context of research on the ethical, legal and social implications (ELSI) of human genomics, as this research may be financially supported by the ELSI Research Program. Empirical evidence regarding the funding of ELSI research and where such research is disseminated, in relation to the specific topics of the research and methods used, can help to further discussions regarding the appropriate influence of specific institutions and institutional contexts on ELSI and other bioethics research agendas. METHODS: We reviewed 642 ELSI publications (appearing between 2003-2008) for reported sources of funding, forum for dissemination, empirical and non-empirical methods, and topic of investigation. RESULTS: Most ELSI research is independent of direct grant-based funding sources; 66% reported no such sources of funding. The National Human Genome Research Institute (NHGRI) is the most dominant source of funding; 16% of publications acknowledged at least one source of NHGRI grant funding. Funding is acknowledged more frequently in empirical than non-empirical publications, and more frequently in publications in public health journals than in any other ELSI research dissemination forums. Dominant research topics vary by publication forum and by reported funding. CONCLUSIONS: ELSI research is surprisingly independent of direct grant-based funding, yet correlations are apparent between this type of funding and publication placement, topics addressed, and methods used, implying a not insignificant influence on ELSI research agenda-setting. However, given the relatively low percentage of publications acknowledging external grant-based funding, as well as other significant correlations between publication placement and topics addressed, additional institutional contexts, perhaps related to professional advancement or valuation, may shape research agendas in ways that potentially exceed the direct influences of grant-based funding in this area. In some cases, grant-based funding may actually counter other potentially problematic institutional influences.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Identification of Publications Used in this Study
See this image and copyright information in PMC

References

    1. Andrews LA. The clone age. New York, NY: Henry Holt and Company; 1999.
    1. Arar NH, Hazuda H, Steinbach R, Arar MY, Abboud HE. Ethical issues associated with conducting genetic family studies of complex disease. Annals of Epidemiology. 2005;15(9):712–719. - PubMed
    1. Benner P. Creating a more responsible public dialogue about the social, ethical, and legal aspects of genomics. American Journal of Critical Care. 2003;12:259–261. - PubMed
    1. Bio-Medical Ethics Reference Server. [Accessed on June 1, 2008];Stanford University Center for Integration of Research on Genetics and Ethics. http://bmers.stanford.edu. Website no longer available.
    1. Callahan D. Bioethics, our crowd, and ideology. Hastings Center Report. 1996;26(6):3–4. - PubMed

LinkOut - more resources