Neuroethics, Privacy, and Data Governance: Advocating for Identifying Root Challenges Before Going to Tactics

By Karen Rommelfanger

Image courtesy of Pixabay
I recently gave a talk for the Data Standards and Sharing Working Group of the International Brain Initiative (IBI), a consortium of the seven existing and emerging national-level brain research projects around the globe. I was tasked with discussing Neuroethics Opportunities for Data Standards and Sharing. I share a bit of my thinking here on how neuroethics fits into a broader discussion about global neuroscience data standards and sharing activities. Importantly, I highlight the distinctions between governance and neuroethics and how they can work together to have robust social impact.

Data governance is an incredibly important topic in an ever-changing and complex landscape. But to be clear, I want to share that neuroethics, although related, is not the same as data governance. Governance typically consists of processes meant to maintain and promote agreed upon values. Nor is neuroethics the same as compliance. Compliance is generally an ethical floor and a bit reactive in nature, whereas ethics involves proactive reflection, helping to surface, sort, and make sense of values and value conflicts. Being compliant will not necessarily guarantee the best ethical outcome. And as history has shown, sometimes to make the best ethical choice is to do so in spite of the law.

The job of ethics is often to surface the invisible and unspoken values from which science emerges and reciprocally influences. In one sense, technology is a product of our societal values, but in another technology can also challenge and surface shaky and perhaps uncritical and often unquestioned values.

Neuroscience is raising questions about the nature of living and dying, mental privacy, identity-- features perhaps that once seemed immutable but whose definitions are now challenged and whose meaning seems less and less clear in light of emerging neuroscience (GNS Delegates et al, 2018). But before going straight to policy and governance, we need to explore the tensions, assumptions, and multiple perspectives of a variety of stakeholders. This is where neuroethics comes in.

Our Global Neuroethics Working Group recognizes, as we have in our 2018 paper, the need to engage in data sharing for neuroscience, but that importantly when sharing data within countries and across geographic boundaries, reconciling divergent government and standards will first require a look at underlying values and culture that informed those existing policies.

Culture impacts which science is pursued, where that science occurs, and how results are disseminated and shared. As we state in our 2018 paper:

“Ultimately, cultural values influence not only how science is done, but also how the science might be adopted and integrated in societal practice. The consequences of cultural misunderstandings are far from trivial for the scientific enterprise. Gaps in understanding lead to missed opportunities for collaboration and advancement toward future discoveries, limit the ability to broadly share results and thereby reap the benefits of neuroscience findings, and ultimately result in a failure to recognize the short- and long-term potential and risks of neuroscience research.”

And to be clear, we also state that --

“These cultural differences exist between national entities, within defined societies, and also among individual researchers and practitioners.”

Image courtesy of ndla.no
Our emphasis on perspective-taking here encourages reflection and inquiry of the values and philosophical traditions within and across national settings. This is an especially relevant issue to explore with brain science. The brain is special not just biologically, but almost more importantly the brain is special culturally. The brain’s cultural meaning cannot be divorced from biological findings nor vice versa. This is why we see biological information about the brain being used to determine declarations of death, questions on whether entities or individuals are alive. This information about the brain impacts notions of decision-making and free will and these data have seen their way into courts around the globe. And even today, brain-derived information is being pursued in the commercial space to quantify notions of healthy minds or brains and predicting risk for disease like Alzheimer’s or schizophrenia and even mental health resilience in a post-Covid world.

This is why brain science and the data derived from it deserve particular ethical consideration in real-time — as part of the science, not as a reactive afterthought. We can live under the illusion that science operates in an independent space from ethical inquiry, but science and scientists are value-laden and full of personal values and assumptions.

And interestingly and consistently enough, in a fast-paced world, it’s a tendency to go to tactics before articulating the root problem. Where are the ethical tensions, and what are the cause of the tensions? Where can we align our values, and where does it actually matter if we don’t align?

Our Global Neuroethics Working Group which began its work in 2016 looks at these tensions, tries to unearth them, articulate them, align around a problem, and then work to solve it together through our collective wisdom.

Our general methodology involves formal research and community conversation to identify a problem or challenge, consensus-reaching on those issues, more research and synthesis on how to address them, and creation of a practical and usable output in a relatively short period of time (usually within a year).

What we also hope to derive from the IBI community is a real-world lab, not only to create recommendations but also to participate as a test ground to pilot these recommendations, solutions, and best practices even beyond the IBI.

This year, we’re addressing the challenge of neuroethics sustainability in neuroscience, which will require capacity/skills-building and also identifying levers for neuroethics strategy implementation. But first, we’re landscaping hurdles, incentives for addressing hurdles where applicable, and a preliminary strategy for neuroethics integration.

By the end of this year, we’ll have a number of deliverables, but the primary will be a map of neuroethics bottlenecks and roadblocks through the neuroscience lifecycle. For our next Global Neuroethics Summit we hope to solidify strategies, frameworks, and other tools for overcoming those challenges.

Image courtesy of Wikimedia Commons
We understand any attempt to establish an international data governance framework that needs to strike a balance in the public good that data sharing could offer with respect for rights and values of the individuals from whom the data is derived. And part of that work will necessarily require clarity on the ethical and legal issues in the various stages and flows of data collection and dissemination.

An example of some collaborative goals for neuroethicists and those scientists, engineers and policy makers attempting to address these challenges include:
  • Identification of values and principles: What and whose values around data sharing do we share and how might we differ across and within geographic boundaries. And which ones are truly non-negotiables for international organizations like the IBI, for instance?
  • Strategizing on levers for change: What insights from these values can be used as levers to enhance and enable international data governance? What incentive structures can be used for value alignment?
I also wanted to share some questions from our 2018 paper that we might want to explore more deeply with those in the broader community interested in neurodata privacy and sharing.

Ethical insufficiencies of current law
  • What are ethical issues not currently addressed by law?
    • How to avoid risk to innovation for fear of upholding some yet to be articulated value or principle?
  • What does “respect” for individuals and their values look like?
  • What is “responsible” and “acceptable” data processing practice?
  • Are neuroscience data different in degree or kind, and when does such a difference matter (e.g., do we need unique human rights, or privacy governance)?
  • Which flows (and kinds) of data (or attributes of data) raise ethical concern?—especially as data and big data analyses become increasingly complex?
Privacy and Rights
  • How do notions of privacy (e.g., physical, informational, decisional, proprietary) intersect with free-will and identity? And which notions are dominating existing ethics and law instruments in the neuroscience ecosystem?
  • Whose privacy interest is at stake in the case of data sharing and what are these interests? How do they relate to brain data?
  • What are historical community values around notions of privacy and conceptualization of the role of the brain in personhood?
Tactics & Ethical Tool Development
  • How to harmonize ethical perspectives and steward data ethically across geographies and cultures?
  • How to clarify and address relevant ethical issues throughout the data lifecycle?
  • How to create practical, ethical, and universal tools?
    • Are current ethics instruments and practices outdated, like standard informed consent procedures?
  • How can researchers reconcile the differences in regulatory and welfare standards among a plurality of national values and standards?
    • Recognizing that to quote from the HBP Data Privacy and Protection Opinion and action plan: “… compliance with current regulations does not exhaust the ethical issues raised. First, because current oversight might not fully protect people from associated privacy related risks. Second, because, though necessary, legislation is not sufficient to make people more ethically sensitive to privacy violations and more aware of the importance of respecting privacy and the need to meet the duties they might have towards those who provide the data.”
Another great chapter by Tugba Basaran Akmazoglu and Jennifer Chandler asks the question: Do we need new human rights to advancing technology? and calls for us to engage earlier questions to map which human interests are at stake.

We’re looking forward to more opportunities to work with partners who shared our goal: Advancing (the enterprise and the benefits of) ethical neuroscience for humanity around the world.

Please see the following links to learn more about our work:

Global Neuroethics Working Group: https://globalneuroethicssummit.com
International Brain Initiative: https://www.internationalbraininitiative.org
Neuroethics Questions for Neuroscientists: https://www.cell.com/neuron/fulltext/S0896-6273(18)30823-7

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Dr. Rommelfanger is an Associate Professor in the Departments of Neurology and Psychiatry and Behavioral Sciences. She also Directs the Neuroethics and Neurotech Innovation Collaboratory and the Neuroethics Program Director at Emory University’s Center for Ethics. She holds editorial positions as Senior Associate Editor at the American Journal of Bioethics Neuroscience. Link to her lab page here: https://neuroethicslab.com




Want to cite this post?

Rommelfanger, K. (2021). Neuroethics, Privacy, and Data Governance: Advocating for Identifying Root Challenges Before Going to Tactics. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2021/05/neuroethics-privacy-and-data-governance.html

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