Neuroethics, Privacy, and Data Governance: Advocating for Identifying Root Challenges Before Going to Tactics
|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.
|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.
|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.
- 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?
- 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?
- 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?
- 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.”
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