# NeuroEthics of Non-Therapeutic Invasive Human Neurophysiologic Research

> **NIH NIH RF1** · UT SOUTHWESTERN MEDICAL CENTER · 2020 · $1,069,366

## Abstract

Contact PD/PI: Pouratian, Nader
Project Summary/Abstract
The BRAIN Initiative has made a significant investment in invasive human neuroscientific studies that take
advantage of unique neurosurgical opportunities to study basic human neuroscience without therapeutic intent.
These non-therapeutic studies are of particular ethical interest due to uncertainty and disagreement about when
such studies should be allowed, particularly with respect to risk/benefit assessments. Such ethical issues arise
since (1) these investigations expose participants to additional risks beyond that of therapeutic surgery, (2) these
risks cannot be offset by any expectation of direct therapeutic benefit, (3) the neurological sequelae may be more
consequential than harm to other organs, (4) the rarity of the investigative techniques results in uncertainty of
the actual risks, and (5) the benefits or value of such investigations are not explicitly obvious, and given the rapid
growth of this field, it may become increasingly unclear what knowledge we should value going forward as
society. We hypothesize (i) that patient-participants living with disabling disorders have a unique and valuable
perspective on the risks and worth of such research, (ii) that such judgements may contrast with those of
investigators and the general public based on differing life experience, and (iii) that understanding these different
judgments can advance the ethical design of future studies and critically broaden the field’s discussion of valuing
the individual risks against the social benefit of the research. In Aim 1, we seek to understand patient-participant
perspectives on risks, benefits, and permissibility of such trials. This population may have unique perspectives
based on their history of chronic neurologic disease, which may uniquely influence their assessment of risks and
value. We will interview patients across studies with varying degrees of invasiveness to elucidate a wide range
of experiences and to evaluate the impact of invasiveness on the relevant perspectives. In Aim 2, we elucidate
alternate perspectives from investigators (physicians, engineers, neuroscientists and others) as well as the
public, to assess how differing social, life, and occupational experiences impact risk and benefit assessments
This data and data from aim 1 will provide a wide-ranging set of comparative narratives about perceptions of
risks, benefits, and the evaluations thereof. In Aim 3, we will elucidate perspectives from all three populations
on the limits of the risks, benefits, and social worth of future research. Are there limits to what future scientific
goals should be pursued with evolving technology in non-therapeutic studies? To address these aims, we bring
together a multidisciplinary team of clinicians, ethicists, and psychologists to explore the diverse social values
that inform risk/benefit assessments. The proposal is enhanced by an environment with a strong history and
current portfolio of...

## Key facts

- **NIH application ID:** 10452262
- **Project number:** 7RF1MH121373-02
- **Recipient organization:** UT SOUTHWESTERN MEDICAL CENTER
- **Principal Investigator:** Ashley L Feinsinger
- **Activity code:** RF1 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $1,069,366
- **Award type:** 7
- **Project period:** 2021-09-10 → 2025-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10452262

## Citation

> US National Institutes of Health, RePORTER application 10452262, NeuroEthics of Non-Therapeutic Invasive Human Neurophysiologic Research (7RF1MH121373-02). Retrieved via AI Analytics 2026-05-28 from https://api.ai-analytics.org/grant/nih/10452262. Licensed CC0.

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