By Minsoo Kwon
The legalization of cannabis has raised ethical, regulatory, and scientific questions. Panelists discussed these topics during a recent webinar hosted by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics. This article highlights key points made during the conversation.
By Matthew Chun
In a recent paper in Science Advances, researchers have proposed using neuroscientific data from brain scans to “improv[e] the state of evidence-based legal decision-making” in trademark infringement cases. But can — and more importantly, should — such evidence be used? In this blog post, I will review the federal legal standards for trademark infringement, describe the researchers’ proposed use of neuroscientific evidence in trademark litigation, and assess the benefits and limitations of adopting such an approach.
This article is adapted slightly from remarks the author delivered at the 2022 International Neuroethics Society annual meeting on a panel about neurorehabilitation moderated by Dr. Joseph Fins.
By Leslie C. Griffin
I’m a tenured law professor at UNLV. This semester I’m teaching Bioethics and Constitutional Law.
I am healthy, happy, working, and working out.
But I went through hell to be here.
Why? Because twice, doctors told members of my family that due to brain injury, I was about to die. Or if I lived, I would probably live in rehab the rest of my life because I would not be able to work again.
By Emily R.D. Murphy
COVID-19 will be with us — in our society and in our brains — for the foreseeable future. Especially as death and severe illness rates have dropped since the introduction of vaccines and therapeutics, widespread and potentially lasting brain effects of COVID have become a significant source of discussion, fear, and even pernicious rumors about the privileged deliberately seeking competitive economic advantages by avoiding COVID (by continuing to work from home and use other peoples’ labor to avoid exposures) and its consequent brain damage.
This symposium contribution focuses specifically on COVID’s lasting effects in our brains, about which much is still unknown. It is critical to focus on this — notwithstanding the uncertainty about what happens, to how many, and for how long — for two reasons. First, brain problems (and mental health) are largely invisible and thus overlooked and deprioritized. And second, our current disability laws and policies that might be thought to deal with the problem are not up to the looming task. Instead, we should affirmatively consider what brain-forward policies and governance could look like, building on lessons from past pandemics and towards a future of more universal support and structural accommodation of diminishment as well as disability.
By Francis X. Shen
A core failing of the criminal justice system is its inability to individualize criminal sentences and tailor probation and parole to meet the unique profile of each offender.
As legal scholar, and now federal judge Stephanos Bibas has observed, “All too often … sentencing guidelines and statutes act as sledgehammers rather than scalpels.”
As a result, dangerous offenders may be released, while offenders who pose little risk to society are left behind bars. And recidivism is common — the U.S. has an astounding recidivism rate of 80% — in part because the current criminal justice system largely fails to address mental health challenges, which are heavily over-represented in the justice system.
Advances in computational psychiatry, such as the deep phenotyping methods explored in this symposium, offer clinicians newfound abilities to practice precision psychiatry. The idea behind precision psychiatry is both simple and elusive: treat individuals as individuals. Yet advancing such a program in practice is “very ambitious” because no two individual brains — and the experiences those brains have had over a lifetime — are the same.
Deep phenotyping offers the criminal justice system the tools to improve public safety, identify low-risk offenders, and modify decision-making to reduce recidivism. Computational psychiatry can lead to what can be described as precision sentencing.
By Justin T. Baker
The United States faces a growing mental health crisis and offers insufficient means for individuals to access care.
Digital technologies — the phone in your pocket, the camera-enabled display on your desk, the “smart” watch on your wrist, and the smart speakers in your home — might offer a path forward.
Deploying technology ethically, while understanding the risks of moving too fast (or too slow) with it, could radically extend our limited toolkit for providing access to high-quality care for the many individuals affected by mental health issues for whom the current mental health system is either out of reach or otherwise failing to meet their need.
By Amanda Kim, M.D., J.D.‡, Michael Hsu, M.D. ‡, Amanda Koire, M.D., Ph.D. ‡, Matthew L. Baum, M.D., Ph.D., D.Phil. ‡
What obligations do researchers have to disclose potentially life-altering incidental findings (IFs) as they happen in real time?
Deep phenotyping research in psychiatry integrates an individual’s real-time digital footprint (e.g., texts, GPS, wearable data) with their biomedical data (e.g., genetic, imaging, other biomarkers) to discover clinically relevant patterns, usually with the aid of machine learning. Findings that are incidental to the study’s objectives, but that may be of great importance to participants, will inevitably arise in deep phenotyping research.
The legal and ethical questions these IFs introduce are fraught. Consider three hypothetical cases below of individuals who enroll in a deep phenotyping research study designed to identify factors affecting risk of substance use relapse or overdose:
A 51-year-old woman with alcohol use disorder (AUD) is six months into sobriety. She is intrigued to learn that the study algorithm will track her proximity to some of her known triggers for alcohol relapse (e.g., bars, liquor stores), and asks to be warned with a text message when nearby so she can take an alternative route. Should the researchers share that data?
A 26-year-old man with AUD is two years into sobriety. Three weeks into the study, he relapses. He begins arriving to work inebriated and loses his job. After the study is over, he realizes the researchers may have been able to see from his alcohol use surveys, disorganized text messages, GPS tracking, and sensor data that he may have been inebriated at work, and wishes someone had reached out to him before he lost his job. Should they have?
A 35-year-old man with severe opioid use disorder experiences a near-fatal overdose and is discharged from the hospital. Two weeks later, his smartphone GPS is in the same location as his last overdose, and his wearable detects that his respiratory rate has plummeted. Should researchers call EMS? Read More
By Benjamin C. Silverman
Deep phenotyping research procedures pose unique challenges to the informed consent process, particularly because of the passive and boundless nature of the data being collected and how this data collection overlaps with our everyday use of technology.
As detailed elsewhere in this symposium, deep phenotyping in research involves the collection and analysis of multiple streams of behavioral (e.g., location, movement, communications, etc.) and biological (e.g., imaging, clinical assessments, etc.) data with the goal to better characterize, and eventually predict or intervene upon, a number of clinical conditions.
Obtaining voluntary competent informed consent is a critical aspect to conducting ethical deep phenotyping research. We will address here several challenges to obtaining informed consent in deep phenotyping research, and describe some best practices and relevant questions to consider.
By Catherine A Brownstein and Joseph Gonzalez-Heydrich
Given the potential sensitivities associated with describing (i.e., phenotyping) patients with potentially stigmatizing psychiatric diagnoses, it is important to acknowledge and respect the wishes of the various parties involved.
The phenotypic description and depiction of a patient in the literature, although deidentified, may still be of great impact to a family.
By way of example, a novel genetic variant was identified as a likely explanation for the clinical presentation of a patient in a large cohort of individuals with neurodevelopmental and/or psychiatric phenotypes, a finding of great medical interest. The research team elected to further study this candidate and collected samples for functional evaluation of the gene variant and preparation of a case report.
Because the patient had a complicated phenotype, several physicians from various specialties were involved in the patient’s care. The paper draft was circulated amongst the collaborating clinicians and researchers and ultimately shared with the patient’s family by one of their involved caregivers. This is typically not a requirement of such studies, as the informed consent process includes the subjects’ understanding and consent for dissemination of deidentified results in the scientific literature. But as a general practice, families are informed about manuscripts in process, and in this case the family had requested to be kept abreast of ongoing developments.
By Patrick Monette
To what end does a physician have a responsibility toward a research participant? Specifically, what data may be considered “actionable” for the physician to disclose to the patient, and when and how might this be done?
In the clinical setting, contemporary medical ethics address a physician’s “fiduciary responsibility.” That is, there is a well-established professional expectation that the physician will place the patient’s interests above their own and advocate for their welfare. This post focuses on an alternative dyad, that of physician and research participant, to explore how the field has broached the topic of actionability in the setting of clinical research. Read More