Untapped ethical resources for neurodegeneration research

Julie M Robillard,Judy Illes,Adrian J Ivinson,Carole A Federico,Kate Tairyan

doi:10.1186/1472-6939-12-9

Abstract

BackgroundThe research community has a mandate to discover effective treatments for neurodegenerative disorders. The ethics landscape surrounding this mandate is in a constant state of flux, and ongoing challenges place ever greater demands on investigators to be accountable to the public and to answer questions about the implications of their work for health care, society, and policy.MethodsWe surveyed US-based investigators involved in neurodegenerative diseases research about how they value ethics-related issues, what motivates them to give consideration to those issues, and the barriers to doing so. Using the NIH CRISP database we identified 1,034 researchers with relevant, active grants and invited them to complete an online questionnaire. We received 193 responses. We used exploratory factor analysis to transform individual survey questions into a smaller set of factors, and linear regression to understand the effect of key variables of interest on the factor scores.ResultsEthics-related issues clustered into two groups: research ethics and external influences. Heads of research groups viewed issues of research ethics to be more important than the other respondents. Concern about external influences was related to overall interest in ethics. Motivators clustered into five groups: ensuring public understanding, external forces, requirements, values, and press and public. Heads of research groups were more motivated to ensure public understanding of research than the other respondents. Barriers clustered into four groups: lack of resources, administrative burden, relevance to the research, and lack of interest. Perceived lack of ethics resources was a particular barrier for investigators working in drug discovery.ConclusionsThe data suggest that senior level neuroscientists working in the field of neurodegeneration (ND), and drug discovery specifically, are motivated to consider ethics issues related to their work, but the perceived lack of ethics resources thwarts their efforts. With bioethics centres at more than 50% of the institutions at which these respondents reside, the neuroscience and bioethics communities appear to be disconnected. Dedicated ethical, legal and social implications (ELSI) programs, such as those fully integrated into genetics and regenerative medicine, provide models for achieving meaningful partnerships not yet adequately realized for scholars and trainees interested in drug discovery for ND.

Highlights

The research community has a mandate to discover effective treatments for neurodegenerative disorders
The very nature of neurodegenerative diseases, including their slow but unstoppable progression, the vulnerability of the patient populations, concerns over genetic testing and other diagnostic tools, the prospect that drugs may be used to enhance cognitive function, and the myriad of decisions along the path from bench to bedside makes this field of neuroscience research especially vulnerable to a broad spectrum of ethical issues [8]
Using the NIH CRISP database, a searchable database of federally funded research grants of the US-based National Institutes of Health (NIH), and the RePORTER query tool, we identified 1,034 researchers who held active grants with project descriptions containing the key word string “neurodegen*”

Summary

Introduction

The research community has a mandate to discover effective treatments for neurodegenerative disorders. Neurodegenerative disease is an umbrella term for illnesses caused by the progressive loss of neurons and their associated functions This category of diseases includes well known disorders such as Alzheimer’s disease, Parkinson’s disease and multiple sclerosis, as well as less prevalent diseases such as amyotrophic lateral and therapeutic options will emerge over the decade [6,7]. Public and stakeholder expectations about technology and drug discovery will inevitably intermingle with those of the neuroscience community and generate a variety of ethical issues. It is imperative, that the societal concerns surrounding potential implications of new findings be integrated into the earliest stages of research. A significant gap has emerged between laboratory neuroscience research and the societal impact of that research [10]

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