NIH RIF: Guidance for Opportunities in Neuroethics

Input from researchers, academic institutions, professional societies and other stakeholders issolicited on potential topics to explore where the BRAIN Initiative might invest resources in the area of neuroethics, particularly pertaining to emerging neurotechnologies.

While we welcome input from the community on any areas germane to neuroethics, we are particularly interested in feedback on the following topics:

Areas for policy guidance that might be useful for Principal Investigatorsand Institutional Review Boards regarding emerging neuroethics issues associated with neurotechnology research and development. We welcome responses that point to specific strengths or weaknesses in current policies and suggestions for how we can expand and/or improve these policies.

The evolving breadth of neural data and associated issues such as:

  • Who should own the data (the research participant, the investigator, the institution, the public)?
  • Storage of data (in the cloud, via federated databases?) and security concerns
  • Who should have access to these data (by whom, how quickly, for how long, types of data)?
  • Privacy concerns and protection from discrimination for those whose neural data are shared
  • Unintended uses of data

Special considerations associated with novel neuromodulationand neuroimaging technologies:

  • Activation and monitoring of devices (who does it, when is it done)
  • Responsibility for the long-term maintenance of such devices
  • Security regarding the telemetry of data to remote storage devices
  • Potential culpability concerns regarding predictions from neural data

Informed consent issues, specifically pertaining to studies using novelneurotechnologies

  • Establishing greater uniformity in the informed consent process
  • The participant perspective on the consent process
  • How consent permits/hinders what is possible with technological advances
  • Issues for special populations such as pregnant women, children, and those with physical and/or intellectual disabilities or cognitive impairment

How to best integrate neuroethics, as appropriate, in workshops andtrainingopportunities and when communicating neuroscience research findings to:

  • Press
  • Lay public
  • Political leaders
  • Scientific Community

Translation of new tools and technologies for neuroscience research tocontextsbeyond the clinic/bench: Ethics of commercialization, public-private partnerships, wider application of imaging technologies for commercial purposes, and conflicts of interest

The use of ex vivo human brain tissue; including ownership and privacyissues

Specific neuroethics questions that could be addressed using a focusedresearch approach

Any other issues that respondents feel are relevant

Response date: July 29, 2016