Do we need a right to mental privacy? In an era of increasing sophistication in recording, interpreting, and directly intervening on our neural activity – not to mention efforts at combining neural...

All of us ponder the big and enduring human questions—Who am I? Am I free? What should I do? What is good? Is there justice?

This chapter contains sections titled: A Shared Fantasy Thinking About This Shared Fantasy Thinking About Our Thinking About This Fantasy Notes.

As a philosopher interested in biomedical ethics, I find recent advances in genetic technologies both fascinating and frightening. Future technologies for genetic therapies and elimination of clearly deleterious genes offer us the ability to get rid of the cause of much human suffering, seemingly at its physiological root. But memories of past eugenics programs gone horribly awry must make cautious our initial optimism for these generally well-intentioned programs. Most often the scientist proceeds in research with the best of intentions, but (...) that does not make all scientific investigation worth pursuing. (shrink)

Family members can provide crucial support to individuals participating in clinical trials. In research on the “newest frontier” of Deep Brain Stimulation (DBS)—the use of DBS for psychiatric conditions—family member support is frequently listed as a criterion for trial enrollment. Despite the significance of family members, qualitative ethics research on DBS for psychiatric conditions has focused almost exclusively on the perspectives and experiences of DBS recipients. This qualitative study is one of the first to include both DBS recipients and their (...) family members as interview participants. Using dyadic thematic analysis—an approach that takes both the individuals and the relationship as units of analyses—this study analyzes the complex ways in which family relationships can affect DBS trial participation, and how DBS trial participation in turn influences family relationships. Based on these findings, we propose ways to improve study designs to better take family relationships into account, and better support family members in taking on the complex, essential roles that they play in DBS trials for psychiatric conditions. (shrink)

In this article, we explore how deep brain stimulation (DBS) devices designed to “close the loop”—to automatically adjust stimulation levels based on computational algorithms—may risk taking the individual agent “out of the loop” of control in areas where (at least apparent) conscious control is a hallmark of our agency. This is of particular concern in the area of psychiatric disorders, where closed-loop DBS is attracting increasing attention as a therapy. Using a relational model of identity and agency, we consider whether (...) DBS designed for psychiatric regulation may require special attention to agency. To do this, we draw on philosophical work on relational identity and agency, connecting it with reports from people using first-generation DBS devices for depression and obsessive-compulsive disorder. We suggest a way to extend a notion of relational agency to encompass neural devices. (shrink)

Advancements in novel neurotechnologies, such as brain computer interfaces and neuromodulatory devices such as deep brain stimulators, will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of interdisciplinary scholars and practitioners, we examine these challenges and make (...) recommendations to mitigate negative consequences that could arise from the unregulated development or application of novel neurotechnologies. We explore potential ethical challenges in four key areas: identity and agency, privacy, bias, and enhancement. To address them, we propose democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, new methods of identifying and preventing bias, and the adoption of public guidelines for safe and equitable distribution of neurotechnological devices. (shrink)

Agency is talked about by many as something that people living with dementia lose, once they've lost much else—autonomy, identity, and privacy, among other things. While the language of loss may capture some of what transpires in dementia, it can obscure how people living with dementia and their loved ones share agency through sharing capacities for memory, language, and decision‐making. We suggest that one consequence of adopting a framework of loss is that it makes the default response to changes in (...) agency the substitution of a family member's agency for the purported lost agency of someone living with dementia. We argue for an alternative framework in which sharing agency is recognized as a central feature of living with dementia. Building on the work of relational theorists, we argue for the value of thinking about agency in dementia as fundamentally shared, and explore potential implications for treatment, caregiver support, and building dementia‐friendly environments. (shrink)

Separation-based accounts of privacy define privacy as being left alone and unaccessed. Pyrrho et al. propose a more control-based account where privacy is about having the age...

Implantable neurotechnology devices such as Brain Computer Interfaces and Deep Brain Stimulators 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. 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. (shrink)

Brain-computer Interface (BCI) research is rapidly expanding, and it engages domains of human experience that many find central to our current understanding of ourselves. Ethical principles or guidelines can provide researchers with tools to engage in ethical reflection and to address practical problems in research. Though researchers have called for clearer ethical principles or guidelines, there is little existing data on what form these should take. We developed a prospective set of ethical principles for BCI research with specific guidelines and (...) shared them, via a survey, to participants at the 6th International BCI Meeting at the Asilomar Conference Center in 2016. Respondents were broadly supportive of principles of Care for Subjects, Modesty, Participation, Inclusivity, Relationality, Justice, and Social Impact. Principles more traditionally aligned with responsible conduct of research showed higher levels of endorsement. Researcher support for specific principle-based ethical guidelines varied with respect to stringency of researcher obligations. (shrink)

In the United States, health disparities have been framed by categories of race. Racial health disparities have been documented for cardiovascular disease, cancer, diabetes, HIV/AIDS, and numerous other diseases and measures of health status. Although such disparities can be read as symptoms of disparities in healthcare access, pervasive social and economic inequities, and discrimination, some have suggested that the disparities might be due, at least in part, to biological differences based on race. Or, to be more precise, if race itself (...) has no determined biological meaning, race may nonetheless be a proxy that collects a group of individuals who share certain physiological or genotypic features that affect health. (shrink)

New parents suddenly come face to face with myriad issues that demand careful attention but appear in a context unlikely to provide opportunities for extended or clear-headed critical reflection, whether at home with a new baby or in the neonatal intensive care unit. As such, their capacity for autonomy may be compromised. Attending to new parental autonomy as an extension of reproductive autonomy, and as a complicated phenomenon in its own right rather than simply as a matter to be balanced (...) against other autonomy rights, can help us to see how new parents might be aided in their quest for competency and good decision making. In this paper I show how a relational view of autonomy – attentive to the coercive effects of oppressive social norms and to the importance of developing autonomy competency, especially as related to self-trust – can improve our understanding of the situation of new parents and signal ways to cultivate and to better respect their autonomy. (shrink)

We argue that in implanted neurotechnology research, participants and researchers experience what Henry Richardson has called “moral entanglement.” Participants partially entrust researchers with access to their brains and thus to information that would otherwise be private, leading to created intimacies and special obligations of beneficence for researchers and research funding agencies. One of these obligations, we argue, is about continued access to beneficial technology once a trial ends. We make the case for moral entanglement in this context through exploration of (...) participants’ vulnerability, uncompensated risks and burdens, depth of relationship with the research team, and dependence on researchers in implanted neurotechnology trials. (shrink)

This paper presents an overview of the goals, structure, and results of an annual, week-long, summer philosophy institute for high school students. Inspired by other similar programs, the Summer Philosophy Institute of Colorado (SPI-CO) was designed for a culturally diverse group of students, aiming to expose college-track high school students to philosophy, to encourage students in lower-track classifications to pursue college, to offer advising to students on how to make college a reality, to expose both groups of students to critical (...) thinking skills, and to promote cultural diversity in philosophy as a discipline. After explaining why philosophy encourages students in education and why high school students are so well-primed to study it, the authors give a detailed overview of the structure of the institute, including schedule, lesson plan, texts and themes studied, funding, and student demography. The authors conclude by discussing an outreach program that grew out of the SPI-CO and a summary of the initial results of the program. (shrink)

Novel neurotechnologies, like deep brain stimulation and brain‐computer interface, offer great hope for treating, curing, and preventing disease, but raise important questions about effects these devices may have on human identity, authenticity, and autonomy. After briefly assessing recent narrative work in these areas, we show that agency is a phenomenon key to all three goods and highlight the ways in which neural devices can help to draw attention to the relational nature of our agency. Drawing on insights from disability theory, (...) we argue that neural devices provide a kind of agential assistance, similar to that provided by caregivers, family, and others. As such, users and devices participate in a kind of co‐agency. We conclude by suggesting the need for developing relational agency‐competencies—skills for reflecting on the influence of devices on agency, for adapting to novel circumstances ushered in by devices, and for incorporating the feedback of loved ones and others about device effects on agency. (shrink)

The group of Dialectical Theology (also known as Neo-Orthodoxy) included some of the most well-known theologians of the 20th century – Karl Barth, Rudolf Bultmann, Friedrich Gogarten, Eduard Thurneysen, Georg Merz und Emil Brunner. In the summer of 1922 they founded the journal Zwischen den Zeiten, which launched Dialectical Theology as the most influential avant-garde movement in Protestantism during the Weimar Republic. Due to internal strife and theological disagreements, the group began to lose strength in the early 1930s and eventually (...) split up and ceased publishing Zwischen den Zeiten in 1933. The individual members later became fierce critics of each other’s theological works. Gogarten and Barth became arch enemies during the so-called “church struggle” (Kirchenkampf), and Bultmann and Barth became each other’s nemesis in the Federal Republic of Germany.In this article I examine the rise and fall of this movement. I argue that the concept “generation” was central to the early self-understanding and selfjustification of the group. It allowed the group to forge an alliance and oppose an antagonistic group of influential theologians. The claim to speak up for a young generation of theologians and pastors – in opposition to an older, liberal generation – became the rallying cry for Dialectical Theology. Further, I argue that conferences, not only the theological writings, played a central, constitutive role in establishing the group as a theological movement. It was at conferences that the members of Dialectical Theology could challenge the older generation and assert their own theological stance. Instead of merely concentrating on the published theological writings of each of the members, I thus argue that one must additionally focus on the applied concepts and the role of conferences to understand the history of Dialectical Theology. It is only when we include these additional contexts that we understand how Dialectical Theology was able to be launched and sustained as a theological movement despite the irreconcilable differences amongst the members. (shrink)

: Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision-making about how the research is conducted and what is produced and published out of it.

Bioethics has already had a rich interaction with the relatively new field of neurotechnology. Scholars have wondered whether neurotechnological interventions, such as deep brain stimulation, are threats to personal identity, lead to alienation or create dilemmas between authenticity and autonomy, impact autonomy, detract from agency, or lead to self-estrangement. Many of these ethical investigations are concerned not with the targeted health benefits of neurotechnology but with whether and how they fit into users' lives in more personal and profound ways.In some (...) ways, this focus on general bioethical issues... (shrink)

The At Home/Chez Soi project is a pragmatic trial that is intended to test the effectiveness of providing persons who are homeless and mentally ill with housing and support for their mental illnesses. Research undertaken in academic journals and the gray literature about the ethics of conducting pragmatic housing studies with persons who are mentally ill revealed the lack of published knowledge in this area of research ethics. Thus, the At Home/Chez Soi project had to tailor traditional research ethics thinking (...) and tools to best protect its stakeholders. In this article, we outline two of the modifications we made. First, we evaluate the ethical challenges present when participants want to withdraw from a housing study. And second, we describe how adverse events are addressed in our pragmatic trial, and how a specially convened safety committee protects participants and stakeholders. (shrink)

Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision‐making about how the research is conducted and what is produced and published out of it.

Implanted medical devices—for example, cardiac defibrillators, deep brain stimulators, and insulin pumps—offer users the possibility of regaining some control over an increasingly unruly body, the opportunity to become part “cyborg” in service of addressing pressing health needs. We recognize the value and effectiveness of such devices, but call attention to what may be less clear to potential users—that their vulnerabilities may not entirely disappear but instead shift. We explore the kinds of shifting vulnerabilities experienced by people with Parkinson’s disease (PD) (...) who receive therapeutic deep brain stimulators to help control their tremors and other symptoms of PD. (shrink)

Volume 20, Issue 8, August 2020, Page 78-79.

The rise of neurotechnologies, especially in combination with artificial intelligence (AI)-based methods for brain data analytics, has given rise to concerns around the protection of mental privacy, mental integrity and cognitive liberty – often framed as “neurorights” in ethical, legal, and policy discussions. Several states are now looking at including neurorights into their constitutional legal frameworks, and international institutions and organizations, such as UNESCO and the Council of Europe, are taking an active interest in developing international policy and governance guidelines (...) on this issue. However, in many discussions of neurorights the philosophical assumptions, ethical frames of reference and legal interpretation are either not made explicit or conflict with each other. The aim of this multidisciplinary work is to provide conceptual, ethical, and legal foundations that allow for facilitating a common minimalist conceptual understanding of mental privacy, mental integrity, and cognitive liberty to facilitate scholarly, legal, and policy discussions. (shrink)

Disability scholars have argued that the disadvantage of disability is caused primarily by social factors and calls out for social change as a matter of justice. But what about psychiatric disability? While noting several factors that make psychiatric disability a special casethe mentally ill individuals unreliability of judgment and instability of functioningSara Goering argues that much is gained by viewing mental illness through the lens of social oppression and workingtoward recognition of individuals with mental illness as equal members of the (...) human community. (shrink)

Sensationalistic Phenomenalism and Economy of Thought. On Ernst Mach's Concept of Science. Ernst Mach, natural scientist and major precursor of the Vienna Circle, never wants to be a philosopher. Nevertheless his writings are full of valuable hints for a modern theory of human knowledge – with respect to economical, historical and evolutionary aspects. His kind of phenomenalism is sensationalistic, monistic and instrumentalistic. This article deals with some contributions of his approach to actual debates in the general philosophy of science.

The essays in this volume apply philosophical analysis to address three kinds of questions: What are the implications of genetic science for our understanding of nature? What might it influence in our conception of human nature? What challenges does genetic science pose for specific issues of private conduct or public policy?

Goering argues that children, at any age, have the potential to utilize logic and generate philosophical thinking through role-playing yet challenging games. This activity fosters a philosophical imagination for children.

Goering argues that children, at any age, have the potential to utilize logic and generate philosophical thinking through role-playing yet challenging games. This activity fosters a philosophical imagination for children.

Goering argues that children, at any age, have the potential to utilize logic and generate philosophical thinking through role-playing yet challenging games. This activity fosters a philosophical imagination for children.

Goering writes on the perspectives of her students through contrasting philosophy to unrelated anthological texts which include language arts and history.

Goering writes on the perspectives of her students through contrasting philosophy to unrelated anthological texts which include language arts and history.