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Untapped ethical resources for neurodegeneration research
Julie M Robillard1, Carole A Federico, Kate Tairyan
1National Core for Neuroethics, Division of Neurology, University of British Columbia, Vancouver, BC, Canada.
BMC Medical Ethics
|June 4, 2011
Summary
Neuroscientists researching neurodegenerative diseases value ethics but lack resources. Improved integration between neuroscience and bioethics communities is needed for effective drug discovery.
Area of Science:
- Neuroscience
- Bioethics
- Drug Discovery
Background:
- The scientific community is driven to find treatments for neurodegenerative disorders.
- Navigating the evolving ethics landscape requires researchers to be accountable for their work's societal and policy implications.
Purpose of the Study:
- To survey US-based neurodegenerative disease researchers on their valuation of ethics-related issues.
- To identify motivators and barriers influencing researchers' consideration of ethics in their work.
Main Methods:
- 193 US-based neurodegenerative disease researchers completed an online questionnaire.
- Exploratory factor analysis and linear regression were used to analyze survey data.
Main Results:
- Ethics issues clustered into research ethics and external influences; senior researchers prioritized research ethics.
- Motivators included public understanding and external forces; barriers included lack of resources and administrative burden.
- Investigators in drug discovery faced particular barriers due to perceived lack of ethics resources.
Conclusions:
- Senior neuroscientists are motivated by ethics but hindered by resource scarcity.
- A disconnect exists between neuroscience and bioethics communities, despite available bioethics centers.
- Integrated ethical, legal, and social implications (ELSI) programs can foster better partnerships for neurodegenerative disease drug discovery.

