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

Morrissey, Clair; Walker, Rebecca

doi:10.1080/21507716.2012.678550

Cited by 10 publications

(7 citation statements)

References 23 publications

(28 reference statements)

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“…These studies, and others conducted without NHGRI support, have led to the publication of thousands of papers, ranging from examinations of ethical issues in genetic and genomic research and clinical translation, to analyses of legal, public policy, and broader societal issues that the emerging technologies raise more generally [3]. …”

Section: Old But Persistent Challengesmentioning

confidence: 99%

Evolving approaches to the ethical management of genomic data

2013

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The ethical landscape in the field of genomics is rapidly shifting. Plummeting sequencing costs, along with ongoing advances in bioinformatics, now make it possible to generate an enormous volume of genomic data about vast numbers of people. The informational richness, complexity, and frequently uncertain meaning of these data, coupled with evolving norms surrounding the sharing of data and samples and persistent privacy concerns, have generated a range of approaches to the ethical management of genomic information. As calls increase for the expanded use of broad or even open consent, and as controversy grows about how best to handle incidental genomic findings, these approaches, informed by normative analysis and empirical data, will continue to evolve alongside the science.

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Section: Old But Persistent Challengesmentioning

confidence: 99%

Evolving approaches to the ethical management of genomic data

2013

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“…At the same time, ceasing to fund such studies could result in some important disease-specific ELSI research lacking any home for funding and thus not being done at all. [Although some small, typically more conceptual, studies of ethical, legal, and social issues can be done without funding agency support (65), most of the larger, empirically oriented studies require it. ]…”

Section: Priority-setting Challengesmentioning

confidence: 99%

The Ethical, Legal, and Social Implications Program of the National Human Genome Research Institute: Reflections on an Ongoing Experiment

McEwen

Boyer

Sun

et al. 2014

Annu. Rev. Genom. Hum. Genet.

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For more than 20 years, the Ethical, Legal, and Social Implications (ELSI) Program of the National Human Genome Research Institute has supported empirical and conceptual research to anticipate and address the ethical, legal, and social implications of genomics. As a component of the agency that funds much of the underlying science, the program has always been an experiment. The ever-expanding number of issues the program addresses and the relatively low level of commitment on the part of other funding agencies to support such research make setting priorities especially challenging. Program-supported studies have had a significant impact on the conduct of genomics research, the implementation of genomic medicine, and broader public policies. The program's influence is likely to grow as ELSI research, genomics research, and policy development activities become increasingly integrated. Achieving the benefits of increased integration while preserving the autonomy, objectivity, and intellectual independence of ELSI investigators presents ongoing challenges and new opportunities.

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“…However, the role and importance of ELSI research has not been uncontested. Questions have been raised over sources of funding and the potential influence on the research agenda [ 3 ], and whether ELSI research should be driven by public policy or the scientific community [ 4 , 5 ]. Critics of ELSI have suggested that its research is not truly collaborative and contributions made by social scientists, lawyers and ethicists are ‘often limited to narrow, prescriptive positions’ [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

Challenges and opportunities for ELSI early career researchers

et al. 2016

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BackgroundOver the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health (NIH) Human Genomic Project budget in 1990 stimulated the growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research questions as well as prompt re-evaluation of earlier work and a growing number of scholars working in this area now identify themselves as ELSI scholars rather than with a particular discipline.Main textDue to the international and interdisciplinary nature of ELSI research, scholars can often find themselves isolated from disciplinary or regionally situated support structures. We conducted a workshop with Early Career Researchers (ECRs) in Oxford, UK, and this paper discusses some of the particular challenges that were highlighted. While ELSI ECRs may face many of the universal challenges faced by ECRs, we argue that a number of challenges are either unique or exacerbated in the case of ELSI ECRs and discuss some of the reasons as to why this may be the case. We identify some of the most pressing issues for ELSI ECRs as: interdisciplinary angst and expertise, isolation from traditional support structures, limited resources and funding opportunities, and uncertainty regarding how research contributions will be measured. We discuss the potential opportunity to use web 2.0 technologies to transform academic support structures and address some of the challenges faced by ELSI ECRs, by helping to facilitate mentoring and support, access to resources and new accreditation metrics.ConclusionAs our field develops it is crucial for the ELSI community to continue looking forward to identify how emerging digital solutions can be used to facilitate the international and interdisciplinary research we perform, and to offer support for those embarking on, progressing through, and transitioning into an ELSI research career.

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

Cited by 10 publications

References 23 publications

Evolving approaches to the ethical management of genomic data

Evolving approaches to the ethical management of genomic data

The Ethical, Legal, and Social Implications Program of the National Human Genome Research Institute: Reflections on an Ongoing Experiment

Challenges and opportunities for ELSI early career researchers

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