7 Lessons Learned on Neuroethics Integration

By Karen Rommelfanger

Image courtesy of Pixabay
I was recently invited by the OECD to give a talk on Building Capacity to Implement the OECD Recommendation on Responsible Innovation in Neuro-technology.

Having been part of providing input in the formative stages of creating the recommendation, I’ve been happy to see that we are now at the stage of implementation. I was asked to specifically speak to Fostering dialogue and dissemination: Lessons learned and opportunities.

I decided to discuss 3 contexts: 
  1. The first is a national/US context in which I learned from participating in the advisory committee to the NIH director in the process of generating a neuroethics roadmap for the US BRAIN Initiative
  2. The second is a transnational context involving a consortium of the 7 large scale national-level brain research projects around the globe called the International Brain Initiative (IBI) wherein I co-chair the Global Neuroethics Working Group.
  3. The third is related to the private sector with insights learned from one of our ongoing research projects at Emory geared at understanding processual roadblocks for cross-sectorial integration of neuroethics.
Working on the NIH BRAIN Initiative Advisory Committee to the Director (ACD)

First, I’d like to share lessons learned in the construction of a neuroethics roadmap for the US BRAIN Initiative and how we convened discussions around the process and outputs.

The US BRAIN Initiative is a multibillion-dollar national level brain research project which started in 2013 and is slated to end in 2025. This project has had specific plans to integrate neuroethics from its formative stages. The project was about half-way through when the leadership wisely decided to undertake a review and create an updated map for the future that (1) revisited and then planned the future scientific roadmap and (2) developed a neuroethics roadmap that could be integrated into the scientific roadmap.

I participated on a temporary work-group charged to generate this neuroethics roadmap, titled “BRAIN Initiative and Neuroethics: Enabling and Enhancing Neuroscience Advances for Society.” The report was put together by an interdisciplinary group of scientists, clinical researchers, ethicists, and legal scholars, largely in parallel with the group constructing the scientific roadmap. We assessed the neuroethics state-of-the-art, as well as priorities, opportunities, and moonshots for the BRAIN Initiative. 

Both reports were created from input from workshops and feedback to open calls for public comment. The neuroethics report was approved early this year as a separate stand-alone document rather than integrated into the main scientific report. 

As an editor, I curated a special issue in AJOB Neuroscience, the International Neuroethics Society’s flagship journal, in which there was a discussion about the neuroethics report as well as broader issues related to integration of neuroethics. 

Some of the themes and lessons learned from the discussions around the neuroethics roadmap include:

1. Implementation through integration remains a struggle. This is likely unsurprising to most neuroethicists.

Despite growing recognition by significant scientific leadership, we need greater resource allocation for robust neuroethics education, outreach, and embedded integration into neuroscience. The scope of neuroethics varies and impacts ethics activities and acceptance of neuroethics as well. For example, if a bioethics orientation is used, neuroethics may be viewed as simply a subdivision of or redundant with bioethics guidelines/regulations. If more philosophical orientations are used (related to questions of nature of mind, free will), neuroethics may be viewed as less accessible and less practical. The varying definitions of neuroethics have been discussed by many (see Racine and Sample in the Handbook of Neuroethics edited by me and Dr. Syd Johnson, but the implications of these definitions and how neuroethics is considered to bring value deserves further exploration.

2. Second and related, integration doesn’t work without making time for intentional processes of collaboration in multidisciplinary groups.

As a first step, it’s important to surface, name, and set expectations with existing tensions as they will inevitably enter further down the road. Our ACD brought people with varying world views to the table, yet we didn’t articulate from the outset what was underlying ideas that historically bred mistrust (such as notions of the bioethicist as stalling innovation). Doing this surfacing upfront could have advanced many of our conversations more quickly.

Another important intention is to facilitate the conditions for co-creation. Part of this requires that multiple stakeholders must be given the protected space and time to come together for trust building, shared understanding, and goal alignment. Our neuroethics group largely operated in parallel to the scientific group which ultimately didn’t work. This is in contrast, however, to the standing Neuroethics Working Group of the BRAIN Initiative at the NIH which works intimately and one-on-one with neuroscientists and even funds research to have embedded neuroethicists in neuroscientific research. 

3. We need to advocate for societal actors so that they can have capacity to implement neuroethics and avoid orientations where some experts are subservient to others.   

Given the history of scientists fearing the imposed constraints of bioethics, there’s an orientation/tendency to place neuroethics as a servant to science.  Our roadmap group was labeled as a sub-group which signaled a hierarchy where neuroethics was not on equal footing (as initially envisioned by leadership). Likewise, of course, nor should neuroethicists not respect the expertise of neuroscientists. This title created a (un)conscious bias that devalued recommendations on neuroethics.

Image courtesy of the NIH on Flickr
The Global Neuroethics Working Group and the International Brain Initiative 

My next 3 lessons are learned from a yearlong project in neuroethics engagement and capacity building with the transnational project of the International Brain Initiative (IBI). The IBI is a consortium of the 7 large scale national-level brain research projects across the globe. Dr. Sung-Jin Jeong and I chair the Global Neuroethics Working group of the IBI. We’ve hosted a number of summits in past years and generated papers and special issues on neuroethics tools and implementation (which can be found in Neuron). For 2019, we engaged in a landscape and analysis of neuroethics engagement. This was largely a response to the IBI members and the broader neuroethics and neuroscience communities stating repeatedly that more “engagement” was needed in the areas of neuroscience. 

There were a couple of challenging issues that I’ll go into that lead to our next two lessons learned.

4. Be intentional and aware of communication conceptualizations and styles

There seems to be a continuing communication style oriented around the deficit model. This is a communication model where the ‘public’ is considered to be at a deficit of knowledge, almost an empty vessel that needs to be filled with expert knowledge (and largely passively received).  The bi-directional communication that defines public engagement is not the norm for scientists—unidirectional communication or broadcast style communication seems to be the method of choice in the broader community and across brain projects (with the exception of the Human Brain Project, which is partnered with the Danish Board of Technology Foundation; Porcello and Das, 2019).

To be sure, there are times when broadcasting information can help to provide opportunities for the public to stay informed. But we should consider our goals, which brings us to the next point: Communication methodologies are often chosen without articulating a clear goal. Is the goal to garner favor and increase enthusiasm? Is the goal to empower and create a more inclusive scientific process? When neuroscientists and related academic and industrial organizations say they believe engaging the public is important, if they aren’t aware of their goals, they may not be ready for the outcomes of public engagement. To build capacity in neuroethics implementation, we need to learn how to meet people where they are and also be open to pivoting or changing based on that response.  

The final tension in communication styles is identifying best practice and assessment: Empirical assessment can sometimes be a challenge and is not the norm in public engagement, nor it is really in neuroethics (for exception, see this attempt here for indicators of success). However, value may be difficult to ascertain (for particular stakeholders) without clear measures/indicators of beneficial outcome. This evaluation is further complicated because specific and formal goal setting is rarely identified before the communication method has been chosen.

5. Cultivate cultural awareness and trust 

While often professed in practice, the value of multidisciplinary partnership is perceived as unclear and often unrewarded (Porcello and Das, 2019). With different methodologies, definitions, and professional goals of their own respective fields, neuroscientists, neuroethicists, and public engagement specialists need space to build trust, a trust that can bridge the cultural divides of disciplines. Academic culture especially does not always view public engagement specialists and programs as equal partners in the scientific enterprise and there are few incentives to participate in public engagement or neuroethical inquiry. Finally, public engagement efforts and even neuroethics have largely been dominated by geographically and ideologically western practices. Even engagement strategies and design have been modeled primarily by western expertise and orientation. 

Image courtesy of Wikimedia Commons
Neuroethics Roadblocks for Neurotech Innovators: Preliminary Findings

This last context shares some issues that point to compatibility or incompatibility of neuroethics with neurotech innovation in the private sector especially. 

For this, I’ll share some highlights of preliminary findings from interviews with 21 global neurotech innovators in the private sector space.  We asked participants to describe the process of research and innovation from idea to market, which neuroethics issues came up for them, why, and what enabled or preventing them from acting in ways that aligned with professed values. Some highlights of (private sector) compatibility with neuroethics and lessons learned are below.

6. Neurotech innovators aren’t only concerned about money and fast innovation.

Innovators are concerned about ethics, but mostly ethics and not neuro-ethics (e.g., privacy and justice issues). They are concerned about both social impact and risk mitigation. Ethics is viewed as valuable in the process of innovation, both in creative phases and with considering future uses/applications, as long as ethics keeps up with the science—its value is diminished if ethical considerations slow things down.

7. We need to continue to help raise awareness about the differences between ethics and regulation and the added value of ethics. 

Neurotechnology innovators want ethics, but they don’t really want regulation. Participants were pretty consistent in stating that neurodata doesn’t need special guidance unless it’s for non-clinical use. On the other hand, neuroinnovators didn't seem to understand how ethics could be enforced. And just as above with academics, neuroinnovators in the private sector want incentives for engaging with neuroethics.

Next year for the IBI Global Neuroethics Working Group, we’re planning a series of workshops to map processual roadblocks for neuroethics in a variety of sectors. This series of workshop/webinars is forthcoming, so please stay tuned! 

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Dr. Karen S. Rommelfanger received her PhD in neuroscience and received postdoctoral training in neuroscience and neuroethics. Her research explores how evolving neuroscience and neurotechnologies challenge societal definitions of disease and medicine. Dr. Rommelfanger is an Associate Professor in the Departments of Neurology and Psychiatry and Behavioral Sciences, the Neuroethics Program Director at EmoryUniversity’s Center for Ethics, and Senior Associate Editor at the American Journal of Bioethics Neuroscience. She is dedicated to cross-cultural work in neuroethics is co-chair of the Neuroethics Workgroup of the International Brain Initiative. She is an appointed member to the NIH BRAIN Initiative Neuroethics Working Group and is ambassador to the Human BrainProject’s Ethics Advisory Board. She also serves as Neuroethics Subgroup member of the Advisory Committee to the Director at NIH for designing a roadmap for BRAIN 2025. She recently was appointed to the Global Futures Council on Neurotechnology of the World Economic Forum. A key part of her work is fostering communication across multiple stakeholders in neuroscience. As such she edits the largest international online neuroethics discussion forum The Neuroethics Blog and she is a frequent contributor and commentator in popular media such as The New York Times, USA Today and The Huffington Post.


Want to cite this post?

Rommelfanger, K. (2020). 7 Lessons Learned from Different Contexts for Attempting Neuroethics Integration. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2020/11/7-lessons-learned-from-different.html

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