U.S. initiative grapples with ethical questions on brain research

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The Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, launched by the U.S. National Institutes of Health (NIH) in 2013, has a lofty goal: to unravel the cellular basis of cognition and behavior.

Since the initiative’s launch, the NIH has doled out about $1 billion to researchers who are developing tools and technologies to map, measure and observe the brain’s neural circuits. Along the way, the agency has also tried to explore the ethical implications of this research.

Khara Ramos, who directs the neuroethics program at the NIH’s National Institute of Neurological Disorders and Stroke, described the emerging field of neuroethics today at the 2019 Society for Neuroscience annual meeting in Chicago, Illinois.

Spectrum: Was discussion about ethics part of the BRAIN Initiative from the beginning?

Khara Ramos: We knew that we needed to do something with neuroethics, but it took time for us to figure out what exactly, in part because neuroethics is a relatively new field.

Bioethics is a broad field that covers all aspects of biomedicine, but there isn’t specialization of bioethics in kidney research or pulmonary research the way there is in neuroscience research, and that’s really because the brain is so intimately connected with who we are. Neuroscience research raises these unique ethical questions, such as: How might new neurotechnologies alter fundamental notions of agency or autonomy or identity?

We’re starting to focus on data sharing and privacy from a philosophical, conceptual perspective: Is there something unique about brain data that is different from, for instance, genetic data? How do researchers themselves feel about data sharing and privacy? And how does the public view it? For instance, is my social security number more or less sensitive than the kinds of neural data that somebody might be able to get if I were participating in a clinical trial?

S: How are you incorporating neuroethics into the BRAIN Initiative?

KR: We have a neuroethics working group: experts who help us think about the neuroethical implications of the research we fund. We’ve published papers in high-profile neuroscience journals. The working group developed a set of guiding principles that we published last year in the Journal of Neuroscience¹.

We also have topical workshops on new or unresolved ethical issues. For instance, we had one last year on research with human neural tissue and brain organoids. Those meetings bring together neuroscientists with ethicists, philosophers — we had a theologian at that meeting. We’re really trying to meld these perspectives.

S: What kinds of neuroethics research do you fund?

KR: A lot of the research has to do with gathering perspectives. So, for example, a qualitative project that would involve interviews with people who are receiving deep brain stimulation for Parkinson’s disease on how they perceive it to be affecting their autonomy or personality. We might pair that with a quantitative investigation that would give us insight into the prevalence of that kind of a phenomenon.

S: Can you describe one of the neuroethics guiding principles?

KR: One is to identify and address specific concerns the public has about the brain. Even scientifically unjustified fears can have consequences for how the public responds to neuroscience research. So, I think it’s really important for researchers, funders and ethicists to think about the ethical implications, keeping in mind that sometimes things are written in a way that is sensationalized. We really try to be proactive in terms of messaging around interesting and provocative findings that are coming out of the initiative.

S: What do you hope to accomplish?

KR: I would like for neuroethics to be viewed as a discipline that is an essential part of the complement of disciplines that contribute to neuroscience. We really emphasize within the BRAIN Initiative disciplines that have traditionally not focused on neuroscience, such as physics and chemistry and material science. It would be wonderful for neuroethics to be viewed as a discipline that similarly can be part of that interdisciplinary space, and for neuroscientists to be better stewards of their own work.

For more reports from the 2019 Society for Neuroscience annual meeting, please click here.