National Institutes of Health – Bethesda, Maryland
For my PILF-funded summer internship, I served as a special volunteer in Neuroethics with the BRAIN Initiative, a multi-institute, multi-billion-dollar project with the vision of mapping brain function and developing novel neuroimaging and neuromodulation technologies. This exciting initiative involves hundreds of physicians, scientists, and researchers across the country, and as part of its foresight concerning brain technologies, its leadership have accentuated Neuroethics from the start. Over the past 5 years, BRAIN Neuroethics has held many Working Groups and developed a framework of Guiding Principles for grant-giving bodies and researchers alike to use in analyzing new projects and technologies. However, these principles are distilled down to foundational ideas, and their application therefore depends on research into the ethical implications and capabilities of these projects.
While my internship gave me innumerable opportunities to learn about the function of the BRAIN Initiative and the NIH in general, my contribution was centered around applying these foundational ideas across BRAIN Initiative technologies. My focus was on data sharing and privacy, which is relevant not only as an important aspect of research ethics but has been part of a growing ethical discussion about the future of communication and technology. Under the guidance of Dr. Khara Ramos, a neuroethicist tasked with organizing the application of the Guiding Principles, I created a risk assessment and research collection methodology for researching data privacy concerns with respect to each BRAIN-related technology.
This project combined a great deal of intensive technological research with independent research-design, and the enormity of the task required me not only to complete my own research but create replicable research methodologies that could be carried out in future ethics-related research. Furthermore, given the enormity of the task of overseeing hundreds of preclinical and clinical grants per year, the leaders of BRAIN cannot be expected to read a comprehensive literature review on each subtopic, so amalgamating large amounts of data—either dozens of ethics articles on a given topic or small studies of the capabilities of technologies or current research practices—about dozens of privacy-related topics was an absolute necessity.
To meet this challenge, Dr. Ramos and I developed an interactive, data-driven risk-assessment compilation. It is a visual representation of risk assessments as applied to specific BRAIN-related technologies, and each technology-associate risk assessment is linked directly to not only a summary of its source material but also the methodology used to create it. This allowed us to collect and process vast quantities of ethics research and present their recommendations in focused, technology-specific assessments, meaning that not only BRAIN leaders but scientific researchers and the public at large can access and easily discern the ethical areas of interest that BRAIN Neuroethics has identified. This hopefully will be useful in data privacy risk assessment and also as a model for the creation of risk assessment compilations for a range of other ethical issues in the future. I will keep in contact with Neuroethics and hopefully contribute more to this effort, including publishing and presenting our ethics compilation at Neuroethics society meetings and in Neuroethics-focused journals.
Submitted August 20, 2018
