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In this paper, we review the standard-setting tools of different levels of government in Canada for overseeing the care of animals used in science against a landscape of other international efforts. We find regulatory inconsistencies, argue that the related shortcomings are detrimental to the level of care afforded to animals, and offer suggestions for a centralized and proactive approach that could close the existing gaps. Given the resources, cost, and time it would take to transform the current system into a single cohesive one, the proposed approach is a stepwise one, and begins with the addition of two new Rs—Reflection and Responsiveness—to the existing 3Rs framework: Replacement, Refinement, and Reduction. Reflection emphasizes more continuous and specific attention to progress in the research pathway as it applies to animals than is currently required by institutional review and reporting; Responsiveness speaks to the immediate action that researchers can take responsively to that ongoing evaluation.

It is a fundamental duty of neuroscientists to discuss the results of research and related ethical implications. Engagement with neuroscience is especially critical for families with children affected by disorders such as drug resistant epilepsy (DRE) as they navigate complex decisions about innovations in treatment that increasingly include invasive neurotechnologies. Through an evidence-based, iterative, and value-guided approach, we created the short-form documentary film, Seizing Hope: High Tech Journeys in Pediatric Epilepsy, to delve into the relationship between experts with first-hand, lived experience – youth with DRE and caregivers – and physician experts as they weigh medical and ethical trade-offs on this landscape. We describe the co-creation and evolution of this film, screenings, and feedback. Survey responses from 385 viewers highlight new developments in technologies for the treatment of DRE, how families navigate choices for treatment with brain technology, and a sense of hope for the future for children with epilepsy as key attributes of this science communication piece.

Abstract Background Diversity among editorial boards and in the peer review process maximizes the likelihood that the dissemination of reported results is both relevant and respectful to readers and end users. Past studies have examined diversity among editorial board members and reviewers for factors such as gender, geographic location, and race, but limited research has explored the representation of people with disabilities. Here, we sought to understand the landscape of inclusivity of people with lived experience of spinal cord injury specifically in journals publishing papers (2012–2022) on their quality of life. Methods An open and closed 12-question adaptive survey was disseminated to 31 journal editors over a one-month period beginning December 2022. Results We received 10 fully completed and 5 partially completed survey responses (response rate 48%). Notwithstanding the small sample, over 50% (8/15) of respondents indicated that their journal review practices involve people with lived experience of spinal cord injury, signaling positive even if incomplete inclusivity practices. The most notable reported barriers to achieving this goal related to identifying and recruiting people with lived experience to serve in the review and editorial process. Conclusions In this study we found positive but incomplete trends toward inclusivity in journal practices involving people with lived experience of spinal cord injury. We recommend, therefore, that explicit and genuine efforts are directed toward recruitment through community-based channels. To improve representation even further, we suggest that editors and reviewers be offered the opportunity to self-identify as living with a disability without discrimination or bias.

Digital research methodologies are driving a revolution in health technology but do not yet fully engage diverse and historically underrepresented populations. In this paper, we explore the ethical imperative for such engagement alongside accompanying challenges related to recruitment, appreciation of risk, and confidentiality, among others. We critically analyze existing research ethics frameworks and find that their reliance on individualistic and autonomy-focused models of research ethics does not offer adequate protection in the context of the diversity imperative. To meet the requirements of justice and inclusivity in digital research, methods will benefit from a reorientation toward more participatory practices.

Neuroscience research has been expanding, providing new insights into brain and nervous system function and potentially transformative technological applications. In recent years, there has been a flurry of prominent international scientific academies and intergovernmental organizations calling for engagement with different publics on social, ethical, and regulatory issues related to neuroscience and neurotechnology advances. Neuroscientific activities and outputs are value-laden; they reflect the cultural, ethical, and political values that are prioritized in different societies at a given time and impact a variety of publics beyond the laboratory. The focus on engagement in neuroscience recognizes the breadth and significance of current neuroscience research whilst acknowledging the need for a neuroethical approach that explores the epistemic and moral values influencing the neuroscientific agenda. The field of neuroethics is characterized by its focus on the social, legal, and philosophical implications of neuroscience including its impact on cultural assumptions about the cognitive experience, identity, consciousness, and decision-making. Here, we outline a proposal for neuroethics engagement that reflects an enhanced and evolving understanding of public engagement with neuroethical issues to create opportunities to share ideation, decision-making, and collaboration in neuroscience endeavors for the benefit of society. We demonstrate the synergies between public engagement and neuroethics scholarship and activities that can guide neuroethics engagement.

ObjectivesWearable body and brain sensors are permeating the consumer market and are increasingly being considered for workplace applications with the goal of promoting safety, productivity, health, and wellness. However, the monitoring of physiologic signals in real-time prompts concerns about benefit and risk, ownership of such digital data, data transfer privacy, and the discovery and disclosure of signals of possible health significance. Here we explore the perceptions and perspectives of employers and employees about key ethical considerations regarding the potential use of sensors in the workplace.MethodsWe distributed a survey developed and refined based on key research questions and past literature to a wide range and size of industries in British Columbia, Canada. Both employers (potential Implementers) and employees (potential Users) were invited to participate.ResultsWe received 344 survey responses. Most responses were from construction, healthcare, education, government, and utilities sectors. Across genders, industries, and workplace sizes, we found a convergence of opinions on perceived benefit and concern between potential Implementers and potential Users regarding the motivation to use biosensors in the workplace. Potential Implementers and Users also agreed on issues pertaining to safety, privacy, disclosure of findings of possible medical significance, risks, data ownership, data sharing, and transfer of data between workplaces. The greatest variability between potential Users and Implementers pertained to data ownership.ConclusionStrong agreement in the perception of biosensor use in the workplace between potential Implementers and Users reflects shared interest, motivation, and responsibility for their use. The use of sensors is rapidly increasing, and transparency about key use factors–both practical and ethical–is essential to maintain the current and desirable level of solidarity.

Abstract Background Appropriate search strategies are essential to ensure the integrity and reproducibility of systematic and scoping reviews, as researchers seek to capture as many relevant resources as possible. In the case of Indigenous health reviews, researchers are met with the special challenge of creating a search strategy that can encompass this large, diverse population group with no universally agreed upon identification criteria. Main body With an aim to promote improved review methodologies that uphold standards of justice, autonomy, and equity for Indigenous peoples and other heterogeneous populations, we describe critical gaps and approaches to close them. We report organizational and transparency issues around how Indigenous populations are indexed in several major databases, and draw on examples of published reviews and protocols to demonstrate the challenges inherent to creating a comprehensive search strategy. Conclusions The conduct and communication of results from health literature research on global Indigenous populations are compromised by challenges of methodology that are rooted in the complexities inherent to defining Indigenous peoples. These challenges must be urgently addressed to improve this important field of inquiry moving forward.

A brain-computer interface technology that can decode the neural signals associated with attempted but unarticulated speech could offer a future efficient means of communication for people with severe motor impairments. Recent demonstrations have validated this approach. Here we assume that it will be possible in future to decode imagined (i.e., attempted but unarticulated) speech in people with severe motor impairments, and we consider the characteristics that could maximize the social utility of a BCI for communication. As a social interaction, communication involves the needs and goals of both speaker and listener, particularly in contexts that have significant potential consequences. We explore three high-consequence legal situations in which neurally-decoded speech could have implications: Testimony, where decoded speech is used as evidence; Consent and Capacity, where it may be used as a means of agency and participation such as consent to medical treatment; and Harm, where such communications may be networked or may cause harm to others. We then illustrate how design choices might impact the social and legal acceptability of these technologies.

Traditionally, recording from and stimulating the brain with high spatial and temporal resolution required invasive means. However, recently, the technical capabilities of less invasive and non-invasive neuro-interfacing technology have been dramatically improving, and laboratories and funders aim to further improve these capabilities. These technologies can facilitate functions such as multi-person communication, mood regulation and memory recall. We consider a potential future where the less invasive technology is in high demand. Will this demand match that the current-day demand for a smartphone? Here, we draw upon existing research to project which particular neuroethics issues may arise in this potential future and what preparatory steps may be taken to address these issues.

Open Science is calling for a radical re-thinking of existing scientific practices. Within the neuroimaging community, Open Science practices are taking the form of open data repositories and open lab notebooks. The broad sharing of data that accompanies Open Science, however, raises some difficult ethical and legal issues. With neuroethics as a focusing lens, we explore eight central concerns posed by open data with regard to human brain imaging studies: respect for individuals and communities, concern for marginalized communities, consent, privacy protections, participatory research designs, contextual integrity, fusions of clinical and research goals, and incidental findings. Each consideration assists in bringing nuance to the potential benefits for open data sharing against associated challenges. We combine current understandings with forward-looking solutions to key issues. We conclude by underscoring the need for new policy tools to enhance the potential for responsible open data.

Neurosurgery for psychiatric disorders (NPD), also sometimes referred to as psychosurgery, is rapidly evolving, with new techniques and indications being investigated actively. Many within the field have suggested that some form of guidelines or regulations are needed to help ensure that a promising field develops safely. Multiple countries have enacted specific laws regulating NPD. This article reviews NPD-specific laws drawn from North and South America, Asia and Europe, in order to identify the typical form and contents of these laws and to set the groundwork for the design of an optimal regulation for the field. Key challenges for this design that are revealed by the review are how to define the scope of the law (what should be regulated), what types of regulations are required (eligibility criteria, approval procedures, data collection, and oversight mechanisms), and how to approach international harmonization given the potential migration of researchers and patients.

Neuroimaging genetics is a rapidly developing field that combines neuropsychiatric genetics studies with imaging modalities to investigate how genetic variation influences brain structure and function. As both genetic and imaging technologies improve further, their combined power may hold translational potential in terms of improving psychiatric nosology, diagnosis, and treatment. While neuroimaging genetics studies offer a number of scientific advantages, they also face challenges. In response to some of these challenges, global neuroimaging genetics collaborations have been created to pool and compare brain data and replicate study findings. Attention has been paid to ethical issues in genetics, neuroimaging, and multi-site collaborative research, respectively, but there have been few substantive discussions of the ethical issues generated by the confluence of these areas in global neuroimaging genetics collaborations. Our discussion focuses on two areas: benefits and risks of global neuroimaging genetics collaborations and the potential impact of neuroimaging genetics research findings in low- and middle-income countries. Global neuroimaging genetics collaborations have the potential to enhance relations between countries and address global mental health challenges, however there are risks regarding inequity, exploitation and data sharing. Moreover, neuroimaging genetics research in low- and middle-income countries must address the issue of feedback of findings and the risk of essentializing and stigmatizing interpretations of mental disorders. We conclude by examining how the notion of solidarity, informed by an African Ethics framework, may justify some of the suggestions made in our discussion.

Wearable devices that record brain signals may present privacy concerns for consumers. Industry leaders discussed four such concerns with us that pertain to data collection and management, user autonomy and information transparency, exceptionalism of brain data, and regulatory systems.

Abstract Background Scientific and financial investments in chronic cerebrospinal venous insufficiency (CCSVI) research have been made to address both the hope for and scepticism over this interventional strategy for MS. Despite limited evidence in support of the CCSVI hypothesis, the funding of clinical research was responsive to a demand by the public rarely seen in the history of medicine. We characterize patient perspectives about the CCSVI research trajectory, with particular attention to its impact on other non-pharmaceutical areas of MS research with a focus on stem cell interventions. Methods Semi-structured interviews with 20 MS patients across Canada who did not have CCSVI interventions. Interviews were analysed for recurring themes and individual variations using the constant comparative approach. Results Participants had a critical view of the divestment of funds from longstanding research to support CCSVI trials. They retain a sense of optimism, however, about emerging evidence for stem cell interventions for MS, and highlight the need for greater caution and conscientious communication of advances in medicine and science. Conclusions The unrealized hopes for CCSVI challenged but did not undermine the resilience of patient communities. The narrative that unfolded highlights the importance of drawing a socially-minded space for public participation in science.

Abstract Regenerative medicine has attracted the interest of scientists, physicians, and patient communities, and as well as policy-makers and the broader public given related ethical, legal, and social implications. Here we examine past initiatives in the ethical, legal and social implications arena in regenerative medicine, and offer our views on actionable priorities for the future in six key areas: capacity building, policy, engagement with industry, resaerch ethics, communication, and community building.

Abstract Introduction Freely accessible online tests for the diagnosis of Alzheimer's disease (AD) are widely available. The objective of this study was to evaluate these tests along three dimensions as follows: (1) scientific validity; (2) human‐computer interaction (HCI) features; and (3) ethics features. Methods A sample of 16 online tests was identified through a keyword search. A rating grid for the tests was developed, and all tests were evaluated by two expert panels. Results Expert analysis revealed that (1) the validity of freely accessible online tests for AD is insufficient to provide useful diagnostic information; (2) HCI features of the tests are adequate for target users, and (3) the tests do not adhere to accepted ethical norms for medical interventions. Discussion The most urgent concerns raised center on the ethics of collecting and evaluating responses from users. Physicians and other professionals will benefit from a heightened awareness of these tools and their limitations today.

Objectives: In 2007, a novel pathogenic genetic mutation associated with early onset familial Alzheimer disease was identified in a large First Nation family living in communities across British Columbia, Canada. Building on a community-based participatory study with members of the Nation, we sought to explore the impact and interplay of medicalization with the Nation’s knowledge and approaches to wellness in relation to early onset familial Alzheimer disease. Methods: We performed a secondary content analysis of focus group discussions and interviews with 48 members of the Nation between 2012 and 2013. The analysis focused specifically on geneticization, medicalization, and traditional knowledge of early onset familial Alzheimer disease, as these themes were prominent in the primary analysis. Results: We found that while biomedical explanations of disease permeate the knowledge and understanding of early onset familial Alzheimer disease, traditional concepts about wellness are upheld simultaneously. Conclusion: The analysis brings the theoretical framework of “two-eyed seeing” to the case of early onset familial Alzheimer disease for which the contributions of different ways of knowing are embraced, and in which traditional and western ways complement each other on the path of maintaining wellness in the face of progressive neurologic disease.

Research on complex health conditions such as neurodevelopmental disorders increasingly relies on large-scale research and clinical studies that would benefit from data sharing initiatives. Organizations that share data stand to maximize the efficiency of invested research dollars, expedite research findings, minimize the burden on the patient community, and increase citation rates of publications associated with the data.This study examined ethics and governance information on websites of databases involving neurodevelopmental disorders to determine the availability of information on key factors crucial for comprehension of, and trust and participation in such initiatives.We identified relevant databases identified using online keyword searches. Two researchers reviewed each of the websites and identified thematic content using principles from grounded theory. The content for each organization was interrogated using the gap analysis method.Sixteen websites from data sharing organizations met our inclusion criteria. Information about types of data and tissues stored, data access requirements and procedures, and protections for confidentiality were significantly addressed by data sharing organizations. However, special considerations for minors (absent from 63%), controls to check if data and tissues are being submitted (absent from 81%), disaster recovery plans (absent from 81%), and discussions of incidental findings (absent from 88%) emerged as major gaps in thematic website content. When present, content pertaining to special considerations for youth, along with other ethics guidelines and requirements, were scattered throughout the websites or available only from associated documents accessed through live links.The complexities of sharing data acquired from children and adolescents will only increase with advances in genomic and neuro science. Our findings suggest that there is a need to improve the consistency, depth and accessibility of governance and policies on which these collaborations can lean specifically for vulnerable young populations.

This paper concerns the ethics of human neuromodulation using transcranial magnetic stimulation (TMS). We examine the challenges of modulating the brain with TMS through the research ethics lens and in clinical medicine for treating frank pathology, primarily in psychiatric diseases. We also consider contemporary issues raised in the neuroethics literature about managing unexpected findings, and relate these to TMS and to other frontier neurotechnology that is becoming openly available in the public domain. We argue that safety and informed consent are of paramount importance for TMS, but that personal values and sociocultural factors must also be considered when examining the promise of this technology and applications that ought to be highlighted for extra precautions.

We used existing and customized bibliometric and scientometric methods to analyze publication trends in neuroimaging research of minimally conscious states and describe the domain in terms of its geographic, contributor, and content features. We considered publication rates for the years 2002–2011, author interconnections, the rate at which new authors are added, and the domains that inform the work of author contributors. We also provided a content analysis of clinical and ethical themes within the relevant literature. We found a 27% growth in the number of papers over the period of study, professional diversity among a wide range of peripheral author contributors but only few authors who dominate the field, and few new technical paradigms and clinical themes that would fundamentally expand the landscape. The results inform both the science of consciousness as well as parallel ethics and policy studies of the potential for translational challenges of neuroimaging in research and health care of people with disordered states of consciousness.

Online social media is widespread, easily accessible and attracts a global audience with a widening demographic. As a large proportion of adults now seek health information online and through social media applications, communication about health has become increasingly interactive and dynamic. Online health information has the potential to significantly impact public health, especially as the population gets older and the prevalence of dementia increases. However, little is known about how information pertaining to age-associated diseases is disseminated on popular social media platforms. To fill this knowledge gap, we examined empirically: (i) who is using social media to share information about dementia, (ii) what sources of information about dementia are promoted, and (iii) which dementia themes dominate the discussion. We data-mined the microblogging platform Twitter for content containing dementia-related keywords for a period of 24 hours and retrieved over 9,200 tweets. A coding guide was developed and content analysis conducted on a random sample (10%), and on a subsample from top users' tweets to assess impact. We found that a majority of tweets contained a link to a third party site rather than personal information, and these links redirected mainly to news sites and health information sites. As well, a large number of tweets discussed recent research findings related to the prediction and risk management of Alzheimer's disease. The results highlight the need for the dementia research community to harness the reach of this medium and its potential as a tool for multidirectional engagement.

Neuroimaging studies involving human subjects raise a range of ethics issues. Many of these issues are heightened in the context of neuroimaging research involving persons with mental health disorders. There has been growing interest in these issues among legal scholars, philosophers, social scientists, and as well as neuroimagers over the last decade. Less clear, however, is the extent to which members of the neuroimaging community are engaged with these issues when they undertake their research and report results. In this study, we analyze the peer-reviewed review literature involving fMRI as applied to the study of mental health disorders. Our hypothesis is that, due to the critical orientation of reviews, and the vulnerability of mental health population, the penetrance of neuroethics will be higher in the review literature in this area than it is in the primary fMRI research literature more generally. We find that while authors of reviews do focus a great deal of attention on the methodological limitations of the studies they discussed, contrary to our hypothesis, they do not frame concerns in ethical terms despite their ethical significance. We argue that an ethics lens on such discussion would increase the knowledge-value of this scholarly work.

Human functional magnetic resonance imaging (fMRI) informs the understanding of the neural basis of mental function and is a key domain of ethical enquiry. It raises questions about the practice and implications of research, and reflexively informs ethics through the empirical investigation of moral judgments. It is at the centre of debate surrounding the importance of neuroscience findings for concepts such as personhood and free will, and the extent of their practical consequences. Here, we map the landscape of fMRI and neuroethics, using citation analysis to uncover salient topics. We find that this landscape is sparsely populated: despite previous calls for debate, there are few articles that discuss both fMRI and ethical, legal, or social implications (ELSI), and even fewer direct citations between the two literatures. Recognizing that practical barriers exist to integrating ELSI discussion into the research literature, we argue nonetheless that the ethical challenges of fMRI, and controversy over its conceptual and practical implications, make this essential.

Ethics is a growing interest for neuroscientists, but rather than signifying a commitment to the protection of human subjects, care of animals, and public understanding to which the professional community is engaged in a fundamental way, interest has been consumed by administrative overhead and the mission creep of institutional ethics reviews. Faculty, trainees, and staff (N=605) whose work involves brain imaging and brain stimulation completed an online survey about ethics in their research. Using factor analysis and linear regression, we found significant effects for invasiveness of imaging technique, professional position, gender, and local presence of bioethics centers. We propose strategies for improving communication between the neuroscience community and ethics review boards, collaborations between neuroscientists and biomedical ethicists, and ethics training in graduate neuroscience programs to revitalize mutual goals and interests.