Deep Brain Stimulation for Substance Use Disorders? An Exploratory Qualitative Study of Perspectives of People Currently in Treatment.

OBJECTIVE: Although previous studies have discussed the promise of deep brain stimulation (DBS) as a possible treatment for substance use disorders (SUDs) and collected researcher perspectives on possible ethical issues surrounding it, none have consulted people with SUDs themselves. We addressed this gap by interviewing people with SUDs. METHODS: Participants viewed a short video introducing DBS, followed by a 1.5-hour semistructured interview on their experiences with SUDs and their perspective on DBS as a possible treatment option. Interviews were analyzed by multiple coders who iteratively identified salient themes. RESULTS: We interviewed 20 people in 12-step-based, inpatient treatment programs (10 [50%] White/Caucasian, 7 Black/African American [35%], 2 Asian [10%], 1 Hispanic/Latino [5%], and 1 [5%] Alaska Native/American Indian; 9 women [45%], 11 men [55%]). Interviewees described a variety of barriers they currently faced through the course of their disease that mirrored barriers often associated with DBS (stigma, invasiveness, maintenance burdens, privacy risks) and thus made them more open to the possibility of DBS as a future treatment option. CONCLUSIONS: Individuals with SUDs gave relatively less weight to surgical risks and clinical burdens associated with DBS than previous surveys of provider attitudes anticipated. These differences derived largely from their experiences living with an often-fatal disease and encountering limitations of current treatment options. These findings support the study of DBS as a treatment option for SUDs, with extensive input from people with SUDs and advocates.

Asking questions that matter - Question prompt lists as tools for improving the consent process for neurotechnology clinical trials.

Implantable neurotechnology devices such as Brain Computer Interfaces (BCIs) and Deep Brain Stimulators (DBS) are an increasing part of treating or exploring potential treatments for neurological and psychiatric disorders. While only a few devices are approved, many promising prospects for future devices are under investigation. The decision to participate in a clinical trial can be challenging, given a variety of risks to be taken into consideration. During the consent process, prospective participants might lack the language to consider those risks, feel unprepared, or simply not know what questions to ask. One tool to help empower participants to play a more active role during the consent process is a Question Prompt List (QPL). QPLs are communication tools that can prompt participants and patients to articulate potential concerns. They offer a structured list of disease, treatment, or research intervention-specific questions that research participants can use as support for question asking. While QPLs have been studied as tools for improving the consent process during cancer treatment, in this paper, we suggest they would be helpful in neurotechnology research, and offer an example of a QPL as a template for an informed consent tool in neurotechnology device trials.

"Re-identifying yourself": a qualitative study of veteran views on implantable BCI for mobility and communication in ALS.

OBJECTIVES: Brain-computer interface (BCI) technology to assist with mobility and communication is an active area of research in amyotrophic lateral sclerosis (ALS). Implantable BCI offers promise for individuals with severe disease, such as locked-in syndrome, but also raises important ethical issues. We undertook in-depth qualitative interviews with ALS patients from a Veterans Administration hospital ALS multi-disciplinary clinic and explored their perspectives on issues of identity, privacy, enhancement, informed consent, and responsibility related to implantable BCI. METHODS: Semi-structured interviews were conducted with sixteen (n = 16) individuals, and transcripts were analysed using a modified grounded theory approach. RESULTS: Emergent themes included: (1) attitudes towards BCI were characterised by fear, hope, and hesitation about adoption of BCI technology; (2) analogies to other technologies were a useful tool in understanding and communicating opinions about ethical issues in BCI; (3) concerns about potentially socially stigmatising effects of BCI and the burden of adjustment to new therapeutic devices were important considerations to be weighed against the potential functional benefit of BCI use; (4) therapeutic decision-making in ALS often intimately involves loved ones; and (5) prospective decision-making about BCI was significantly affected by weighing the timing of the intervention with the progression of illness. CONCLUSION: The interest in BCI and views on ethical issues raised by BCI is moderated by the experience of living with ALS. The findings from this study can help guide the development of implantable BCI technology for persons with ALS.Implications for rehabilitationLoved ones will play crucial roles in helping patients think through the possible benefits and burdens of getting a BCI device.Providers should consider how the ideal timing for getting an implantable BCI device will vary based on the priorities of persons with ALS and their disease stage.Concerns about social stigma, burden of adjustment, and the desire to maximise time left with loved ones may outweigh the potential functional benefits of BCI devices for some persons with ALS.

Mapping the Dimensions of Agency.

Neural devices have the capacity to enable users to regain abilities lost due to disease or injury - for instance, a deep brain stimulator (DBS) that allows a person with Parkinson's disease to regain the ability to fluently perform movements or a Brain Computer Interface (BCI) that enables a person with spinal cord injury to control a robotic arm. While users recognize and appreciate the technologies' capacity to maintain or restore their capabilities, the neuroethics literature is replete with examples of concerns expressed about agentive capacities: A perceived lack of control over the movement of a robotic arm might result in an altered sense of feeling responsible for that movement. Clinicians or researchers being able to record and access detailed information of a person's brain might raise privacy concerns. A disconnect between previous, current, and future understandings of the self might result in a sense of alienation. The ability to receive and interpret sensory feedback might change whether someone trusts the implanted device or themselves. Inquiries into the nature of these concerns and how to mitigate them has produced scholarship that often emphasizes one issue - responsibility, privacy, authenticity, or trust - selectively. However, we believe that examining these ethical dimensions separately fails to capture a key aspect of the experience of living with a neural device. In exploring their interrelations, we argue that their mutual significance for neuroethical research can be adequately captured if they are described under a unified heading of agency. On these grounds, we propose an "Agency Map" which brings together the diverse neuroethical dimensions and their interrelations into a comprehensive framework. With this, we offer a theoretically-grounded approach to understanding how these various dimensions are interwoven in an individual's experience of agency.

"Who Will I Be?": Relational Identity, Living with Amyotrophic Lateral Sclerosis, and Future-Oriented Decisionmaking.

Patients with amyotrophic lateral sclerosis (ALS) face many difficult, timing-sensitive decisions over the course of their illness, weighing present versus future harms and benefits. Supplemented by interviews with people with ALS, we argue for a relational approach to understanding these decisions and their effects on identity. We highlight two critical aspects of the patient-caregiver relationship: (1) the extent to which each may rely on the other leaves their wellbeing intimately intertwined and (2) patients often require others to help with the imaginative task of considering possible futures for each therapeutic option. We show why family involvement in decisionmaking practices can be so critical, and shed light on the ways intimate others help preserve and protect people's identities amidst the destabilizing uncertainty illness and treatment can bring.

What is a Medical Information Commons?

A 2011 National Academies of Sciences report called for an "Information Commons" and a "Knowledge Network" to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

Characterizing the Biomedical Data-Sharing Landscape.

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

Natural variant of collagen-like protein a in serotype M3 group a Streptococcus increases adherence and decreases invasive potential.

Group A Streptococcus (GAS) predominantly exists as a colonizer of the human oropharynx that occasionally breaches epithelial barriers to cause invasive diseases. Despite the frequency of GAS carriage, few investigations into the contributory molecular mechanisms exist. To this end, we identified a naturally occurring polymorphism in the gene encoding the streptococcal collagen-like protein A (SclA) in GAS carrier strains. All previously sequenced invasive serotype M3 GAS possess a premature stop codon in the sclA gene truncating the protein. The carrier polymorphism is predicted to restore SclA function and was infrequently identified by targeted DNA sequencing in invasive strains of the same serotype. We demonstrate that a strain with the carrier sclA allele expressed a full-length SclA protein, while the strain with the invasive sclA allele expressed a truncated variant. An isoallelic mutant invasive strain with the carrier sclA allele exhibited decreased virulence in a mouse model of invasive disease and decreased multiplication in human blood. Further, the isoallelic invasive strain with the carrier sclA allele persisted in the mouse nasopharynx and had increased adherence to cultured epithelial cells. Repair of the premature stop codon in the invasive sclA allele restored the ability to bind the extracellular matrix proteins laminin and cellular fibronectin. These data demonstrate that a mutation in GAS carrier strains increases adherence and decreases virulence and suggest selection against increased adherence in GAS invasive isolates.