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

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 and 2008) for reported sources of funding, forum for dissemination, empirical and nonempirical methods, and topics 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 nonempirical 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.

Keywords:

• genomics [ethics]
• National Human Genome Research Institute (U.S.)
• professional ethics

Acknowledgments

We are grateful for the support of the UNC Center for Genomics and Society, which has funded this research through an NIH Centers for Excellence in ELSI Research grant (number 1P50 HG004488–01) to Gail Henderson (PI). We thank Kelsey Palghat, Warren Whipple, Martha King, and Allen Buansi for their assistance in coding. We also thank the UNC Odum Institute, as well as Gail Henderson, Debra Skinner, and Michele Easter, for advice regarding research methods. Finally, we thank Eric Juengst and Nancy King for substantive, helpful discussions regarding the field of ELSI research.

1. Although this potential tension is noted by commentators, in both the 2003 and 2011 NHGRI strategic visions for genomics research, ELSI research was integrated into the broader vision for genomic research and explicit goals and understandings of the agenda for ELSI research were outlined (Collins et al. 2003; Green, Guyer, and NHGRI 2011). This integration of ELSI research into the broader vision overlooks potential tensions arising from the fact that ELSI research may be critical of genomics research generally, or the NIH or NHGRI goals, more specifically.

Notes

Examples of these programs include: Genome Canada— Genomics and Its Ethical, Economic, Environmental, Legal and Social Aspects (GE3LS; 2012), Instituto Nacional de Medicina Genómica—Department of Legal Studies, Ethical and Social Research Directorate (Instituto Nacional de Medicina Genomica 2012), and the Wellcome Trust—Ethics and Society Programme (Ethics and Society Programme 2012).

While we are unaware of any appearance in print, this idea seemed to be promoted at both the most recent ELSI Congress (Chapel Hill, NC, 2011) and at the most recent Centers for Excellence in ELSI Research (CEERs) investigator meeting (Rockville, MD, 2011).

Although adopting this convention for purposes of elucidating these findings, we believe it is important to note that the terms “conceptual” and “normative” are neither synonymous nor readily defined in ways that indicate a single approach to ELSI research. For example, “conceptual” research may not have normative aims and, furthermore, empirical work may include normative conclusions. In addition to the lack of any necessary alignment between conceptual methods and normative goals, concerns within the ELSI literature regarding the appropriate relationship between empirical work and normative conclusions are not necessarily congruent with the set of meta-ethical concerns reflected variously as the “naturalistic fallacy,” the “is/ought gap,” or the “fact/value distinction.” For a discussion of these frequently cited meta-ethical considerations and their (perceived) importance for bioethics, see deVries and Gordijn (2009).

Table 1 does not report the information in this form, which is a simple calculation based on the information reported there. To determine the proportion of empirical NHGRI supported publications we divided the number of publications categorized as empirical that reported at least one source of NHGRI funding (53) by the total number of publications that reported at least one source of NHGRI funding (102). A similar calculation was done to determine the proportion of empirical U.S. government supported publications and non-U.S. government supported publications.

The full list of topics contains the three more general categories of “other genomic research,” “other genetic testing,” and “other reproductive genetics,” which serve to capture publications addressing topics within these areas broadly or specific subtopics within these areas that are not otherwise represented on the list. We have not included these categories in the correlations detailed here, as they are less meaningful out of context of the complete list of topics.

As an additional check on our surprising results regarding the extent of reported funding for ELSI research and scholarship, we also looked independently at the percentage of research articles from periodicals that acknowledged funding. This did result in a change in the results, from 34% of publications reporting funding to 41% of publications. At the same time, we believe it is important to note that 13% of the book chapters in our study did indicate at least one source of funding, and, while it is likely that the lower rates of funding acknowledged in commentaries result from different expectations regarding reporting of funding within this type of publication, we cannot tell whether the lower rates of reported funding within book chapters reflect different norms of reporting funding or simply a different rate of funding associated with the types of humanities research and scholarship that are more commonly found in books.

Table 2 does not report the information in this form, which is a simple calculation based on the information reported there. To determine what proportion of the publications supported by funding from U.S. and non-U.S. government agencies was nonempirical, we divided the number of nonempirical publications that reported such funding (27 and 46, respectively) by the total number of publications that reported such funding (39 and 59, respectively). See also footnote 5.

That medical journals disproportionately publish articles on research topics relevant to the relatively wealthy is not a novel observation. Studies suggest, for example, that global health inequalities and diseases associated with poverty are not frequently discussed in medical journals (Horton 2003; Rochon et al 2004; Sumathipala, Siribaddana, and Patel 2004; Turner 2007).