BRAIN-COMPUTER INTERFACES AND THE RIGHT TO BE HEARD: CALIBRATING LEGAL AND CLINICAL NORMS IN PURSUIT OF THE PATIENT'S VOICE.

• Author: Lawrence, Caroline

TABLE OF CONTENTS

1. INTRODUCTION 168 II. BRAIN-COMPUTER INTERFACES: PRINCIPLES AND DESIGNS 171 A. Non-Invasive BCI 172 B. EEG-Based Communication 174 C. fMRI-Based Communication 177 D. Invasive BCI. 178 III. POPULATIONS OF BCI USERS 179 A. Locked-In Syndrome 180 B. Aphasia 181 C. Disorders of Consciousness and Cognitive Motor 182 Dissociation IV. BCI AND THE LEGAL SYSTEM 183 A. Capacity 184 B. Competence to Stand Trial 187 C. Evidence 189 1. Testifying Directly in the Courtroom 189 2. Using an Expert Witness 190 V. BCI AND CLINICAL PRACTICE 193 A. Capacity 194 B. Competence and Substituted Decision-Makers 197 C. Evidence and Epistemic Humility 197 VI. OBLIGATIONS OF OTHERS 198 VII. CONCLUSION 200 I. INTRODUCTION

   Mary O'Connor had watched the slow deaths of several loved ones and emphasized to her daughters that she would not want such an outcome for herself. (1) O'Connor's adult daughters petitioned for removal of their now incapacitated mother from life support. (2) Nevertheless, the New York Court of Appeals rejected their plea in In re Westchester County Medical Center ("O 'Connor"), stating that the support the daughters offered for this decision did not meet the standard of clear and convincing evidence. (3)

   Law prioritizes obedience to established rules. Above all, it fears the type I error--the false positive, the conviction of an innocent. In this sense, law often errs on the side of test specificity. Medicine, meanwhile, has as its priority the care of patients, and its risk profile favors test sensitivity. Medicine is more concerned with a type II error, such as a missed diagnosis. While legal standards for clinical care protect the vulnerable, especially during decisions at life's end, these differing norms, grounded in statistical reasoning and consequentialism, do not operate in isolation. Indeed, norms from the law can have a direct impact on medical practice and public health, (4) as illustrated by cases like O 'Connor, where legal standards co-opted a medical decision about care. In such cases, stringent legal standards can tyrannize a context of care where, for example, a standard of clear and convincing evidence is not required and in fact counterproductive. To demand this standard could restrict communication and undermine the care of patients.

   Courts have recognized the potential dangers of overly protective standards for medical decisions. In Cruzan v. Director, Missouri Department of Health, the Supreme Court allowed states to set their own decision-making standards for end-of-life care. (5) After O'Connor and other similar cases, the New York State Department of Health established a new set of evidentiary regulations (6) that were legislated as the Family Health Care Decisions Act of 2010. (7) These standards helped to facilitate surrogate decision-making based on prior preferences, taking account of the patient's contemporaneous articulations.

   While new technology can help foster an individual's ability to communicate, it sometimes creates ambiguity over how to handle information in medical contexts. When faced with uncertainty, physicians may act conservatively and seek refuge in familiar standards, like the high evidentiary standards attached to end-of-life decisions. As a result, physicians may retreat from the flexibility of a care-based ethic into the perceived security of the law's protective confines and bright-line rules, in contrast to situations where law provides little guidance on complex ethical issues at the intersection of law and bioscience. (8)

   Such a dynamic may also occur when assessing brain-computer interface ("BCI") systems that will one day stand in for a patient's voice. BCI technology uses neural activity to allow paralyzed but conscious individuals to communicate. (9) But how will these communications be weighed and assessed? While this challenge may seem to be for the future, legal scholarship must look forward to advances in assisted communication using BCI technology and propose anticipatory governance. (10)

   In this Article, we will pose a number of critical questions for individuals utilizing BCI technology: Will individuals be evaluated using standard measures to assess capacity and legal competency? Will they be assessed neutrally or be subject to techno-skepticism? How much fidelity to the human voice will BCI communication need to achieve to be accepted? Though dilemmas like malfunctioning software might, in fact, be more remediable than disputes between dueling surrogate decision-makers over a patient's prior wishes, the novelty of neuroprosthetic communication raises novel challenges that could lead to misplaced remedies and inappropriate standards.

   BCI technology deserves special attention, both legally and clinically, as medical technology's best hope for patients with severe brain injuries to assert their wishes. Tragedies like Hacienda Healthcare illuminate the abuse to which patients, lacking any tools for self-advocacy, are vulnerable. other patients who cannot use BCI may face abandonment, lack of pain medication, or other forms of abysmal maltreatment. (11) overly stringent knowledge standards or excessively cautious physicians risk damaging the everyday quality of life for BCI users and subjecting BCI users to dignity violations.

   In the spirit of anticipatory governance, and looking toward advances in neuroscience and computing technology in the coming decades, (12) this Article examines the issues raised by usage of BCI technology in the legal and medical clinical contexts. While BCI technology can fit within conventional legal frameworks, this Article argues against allowing restrictive legal standards to dominate more routine decisions in clinical practice or choices made by BCI-assisted patients in daily life. While those making end-of-life decisions may also require BCI technology, many of the quotidian choices that BCI users make involve much less weighty communication. To deprive these individuals of a newfound ability to communicate is to disrespect their personhood on procedural grounds, and so deny their right to be heard. To help prevent this affront to dignity and still protect patients from the burden of decisions that they may not yet be able to undertake, we propose to consider the role that BCI technology might eventually play in patient communication.

   In Part II of this Article, we will outline the principles of BCI design and usage, so that an understanding of the technology can guide legal and clinical decisions. Part III discusses populations of potential users and how they could employ BCI technology to reclaim their independence. The Article will then turn in Part IV to legal issues hastened by BCI technology, particularly capacity, competence to stand trial, and the rules of evidence. Part V will consider the analogous constructs of capacity, competence, and certainty as they appear in medical practice. Finally, in Part VI, we reflect on the obligations we owe to users of BCI prosthetics and how we as a professional community can use these tools to respect and empower others.

2. BRAIN-COMPUTER INTERFACES: PRINCIPLES AND DESIGNS

   A brain-computer interface, in the words of Jonathan and Elizabeth Winter Wolpaw, "measures activity from the central nervous system and converts it into artificial output that replaces, restores, enhances, supplements, or improves natural [central nervous system ('CNS')] output and thereby changes the ongoing interactions between the CNS and its external or internal environment." (13) A BCI typically pairs neural output with a computer application that responds in a predetermined way to brain activity. (14) BCI technology is most commonly, but not exclusively, used in patients with intact cognition but impaired motor output, often due to a spinal cord lesion. (15)

   BCI technology requires users to intentionally produce specific neural output in order to interact with the application. A BCI may create an alternative interface to a preexisting technology for people who cannot use the original, as in an electroencephalography ("EEG")-controlled cursor rather than a mouse manipulated by hands. (16) Alternately, a BCI may furnish an assistive communicative device or a prosthetic. Thus, BCI is a type of assistive technology, a class of devices engineered to bridge the gap between capabilities and desired function in individuals with disorders secondary to motor dysfunction or cognitive impairment. (17) This Article will focus mainly on assistive communicative BCI. These may take the forms of spelling or word generation, ideally supplemented with predictive typing technology or synthetic voices.

   In the following section, we consider different forms of BCI technology. These range from non-invasive modalities like word boards, EEG, and neuroimaging, to invasive methods that surgically insert electrodes into the brain. The following examples are intended to represent the problem space and to model a heuristic for legal and medical implications.

   1. Non-Invasive BCI

      The simplest, earliest assistive communicative devices were word boards or Morse code-like systems. (18) These consisted of some system of characters or words, ordered either alphabetically or by frequency of use. Patients cooperated with a partner, who would indicate options until the patient blinked to select an option. (19) The more modern versions of this involve electrooculography, or eye tracking, in which a camera detects the direction and speed of an individual's gaze as they scan the word board. (20) Users can select options by lingering on the character of choice, which can then lead to language output. (21) While simple, cost-effective, and easy to learn, eye tracking is not an option for all patients. Traumatic injuries can sever the nerves providing ocular control, and the late stages of neurodegenerative diseases like ALS can also inhibit patients' voluntary control over their eyes. (22) The mandate to respect...