The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

The expansion of research on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were (...) either sharing their data or would share in the future and that doing so was important for advancing the field. However, those who are sharing reported a variety of sharing partners, suggesting heterogeneity in sharing practices and lack of the broad sharing that would reflect principles of open science. Researchers described several concerns and barriers related to sharing, including privacy and confidentiality, the usability of shared data by others, ownership and control of data (including potential commercialization), and limited resources for sharing. They also suggested potential solutions to these challenges, including additional safeguards to address privacy issues, standardization and transparency in analysis to address issues of data usability, professional norms and heightened cooperation to address issues of ownership and control, and streamlining of data transmission to address resource limitations. Researchers also offered a range of views on the sensitivity of neural activity data (NAD) and data related to mental health in the context of sharing. These findings are an important input to deliberations by researchers, policymakers, neuroethicists, and other stakeholders as they navigate ethics and policy questions related to aDBS research. (shrink)

The increasing interconnectedness of academic research and external industry has left research vulnerable to conflicts of interest. These conflicts have the potential to undermine the integrity of scientific research as well as to threaten public trust in scientific findings. The present effort sought to identify themes in the perspectives of faculty researchers regarding conflicts of interest. Think-aloud interview responses were qualitatively analyzed in an effort to provide insights with regard to appropriate ways to address the threat (...) of conflicts of interest in research. Themes in participant responses included disclosure of conflicts of interest, self-removal from situations where conflict exists, accommodation of conflict, denial of the existence of conflict, and recognition of complexity of situations involving conflicts of interest. Moral disengagement operations are suggested to explain the appearance of each identified theme. In addition, suggestions for best practices regarding addressing conflicts of interest given these themes in faculty perspectives are provided. (shrink)

Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers’ perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications (...) and challenges to return of individual results. While researchers are willing to return clinically significant genetic results to research participants, they remain unsure of how this should be implemented. Suggestions to aid implementation of return of results included reconsenting of participants before receiving individual genetic results and increasing access to genetic counseling services. Community engagement to determine community perceptions and individual preferences for the return of results, and also prepare participants to safely receive results emerged as another way to support return of results. Researchers have a positive attitude toward the return of clinically significant genetic results to research participants. There is need to develop national guidance on genetic research and also build capacity for clinical genetics and genetic counseling. (shrink)

Ecology has often been characterized as an immature scientific discipline. This paper explores some of the sources of this alleged immaturity. I argue that the perception of immaturity results primarily from the fact that historically ecologists have based their work upon two very different approaches to research.

203 surveys were considered complete and were included in the analysis. Written consent was not used by nearly 40% of the researchers.

ABSTRACT Introduction: Informed consent has been recognized as an important component of research protocols and procedures of disclosure and consent in collaborative research have been criticized, as they may not be in keeping with cultural norms of developing countries. This study, which is part of a larger project funded by the United States National Bioethics Advisory Commission, explores the opinions of developing country researchers regarding informed consent in collaborative research. Methods: A survey of developing country researchers, involved (...) in human subject research, was conducted by distributing a questionnaire with 169 questions, which included questions relating to informed consent. In addition, six focus group discussions, eight in‐depth interviews and 78 responses to open‐ended questions in the questionnaire provided qualitative data. Results: 203 surveys were considered complete and were included in the analysis. Written consent was not used by nearly 40% of the researchers in their most recent studies. A large proportion of respondents recommended that human subject regulations should allow more flexibility in ways of documenting informed consent. 84% of researchers agreed that a mechanism to measure understanding should be incorporated in research studies as part of the process of informed consent. Discussion: This paper is an empirical step in highlighting the ethical issues concerning disclosure. Health researchers in developing countries are well aware of the importance of consent in health research, and equally value the significance of educating human subjects regarding study protocols and associated risks and benefits. However, respondents emphasize the need for modifying ethical regulations in collaborative research. (shrink)

In the academic debate on infrastructures in the Global South, there is a broad consensus that (post)colonial legacies present a major challenge for a transition towards more inclusive, sustainable and adapted modes of providing services. Yet, relatively little is known about the emergence and evolution of infrastructures in former colonies. Until a decade ago, most historical studies followed Daniel Headrick’s (1981) “tools of empire” thesis, painting—with broad brush strokes—a picture of infrastructures as instruments for advancing the colonial project of exploitation (...) and subordination of non-European peoples and environments. This paper explores new research perspectives beyond this straightforward, ‘diffusionist’ perspective on technology transfer. In order to do so, it presents and discusses more recent studies which focus on interactive transfer processes as well as mechanisms of appropriation, and which increasingly combine approaches from imperial history, environmental history, and history of technology.There is much to gain from unpacking the changing motives and ideologies behind technology transfer; tracing the often contested and negotiated flows of ideas, technologies and knowledge within multilayered global networks; investigating the manifold ways in which infrastructures reflected and (re)produced colonial spaces and identities; critically reflecting on the utility of large (socio)technical systems (LTS) for the Global South; and approaching infrastructures in the (post)colonial world through entangled histories of technology and the environment. Following David Arnold’s (2005) plea for a “more interactive, culturally-nuanced, multi-sited debate” on technology in the non-Western world, the paper offers fresh insights for a broader debate about how infrastructures work within specific parameters of time, place and culture. (shrink)

In the academic debate on infrastructures in the Global South, there is a broad consensus that (post)colonial legacies present a major challenge for a transition towards more inclusive, sustainable and adapted modes of providing services. Yet, relatively little is known about the emergence and evolution of infrastructures in former colonies. Until a decade ago, most historical studies followed Daniel Headrick’s (1981) “tools of empire” thesis, painting—with broad brush strokes—a picture of infrastructures as instruments for advancing the colonial project of exploitation (...) and subordination of non-European peoples and environments. This paper explores new research perspectives beyond this straightforward, ‘diffusionist’ perspective on technology transfer. In order to do so, it presents and discusses more recent studies which focus on interactive transfer processes as well as mechanisms of appropriation, and which increasingly combine approaches from imperial history, environmental history, and history of technology.There is much to gain from unpacking the changing motives and ideologies behind technology transfer; tracing the often contested and negotiated flows of ideas, technologies and knowledge within multilayered global networks; investigating the manifold ways in which infrastructures reflected and (re)produced colonial spaces and identities; critically reflecting on the utility of large (socio)technical systems (LTS) for the Global South; and approaching infrastructures in the (post)colonial world through entangled histories of technology and the environment. Following David Arnold’s (2005) plea for a “more interactive, culturally-nuanced, multi-sited debate” on technology in the non-Western world, the paper offers fresh insights for a broader debate about how infrastructures work within specific parameters of time, place and culture. (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)

The problem of the subject area of ethics is, so to speak, one with a "double bottom," for beneath the discussion of its subject matter in the narrow sense is actually concealed a diversity of positions and notions on the part of the participants regarding various prospects for the development of that discipline, the relationship among its various aspects, ways of perfecting its methodology, and so forth. This is a response to the new demands made by practical life in socialist (...) society today. It is also a result of the internal logic of the development of ethical thought and, in a certain sense, of the forecasting of science. It is precisely in this framework that V. T. Efimov's article should mainly be considered. It attracts attention, at the right time and in a polemically acute fashion, to the most urgent "growth points" of ethical knowledge, those urgently requiring joint discussion and decision. Also well chosen, in its way, is the term morality studies, even in the capacity of a preliminary denotation of the entire basic sphere of practical, concrete "validation" of ethics as a philosophical discipline. This term reflects, in our opinion, important trends in the development over the past decade of those aspects of ethics and its methodology that were previously described either as "descriptive ethics," "the sociology of morals," or "the sociology of socialization," or as "ethology," "ethnology," and so forth. As we know, all those terms suffered from imprecision or ambiguity of meaning and did not take root in Soviet philosophical literature. (shrink)

Environmental health research produces scientific knowledge about environmental hazards crucial for public health and environmental justice movements that seek to prevent or reduce exposure to these hazards. The environment in environmental health research is conceptualized as the range of possible social, biological, chemical, and/or physical hazards or risks to human health, some of which merit study due to factors such as their probability and severity, the feasibility of their remediation, and injustice in their distribution. This paper explores the (...) ethics of identifying the relevant environment for environmental health research, as judgments involved in defining an environmental hazard or risk, judgments of that hazard or risk's probability, severity, and/ or injustice, as well as the feasibility of its remediation, all ought to appeal to non-epistemic as well as epistemic values. I illustrate by discussing the case of environmental lead, a housing-related hazard that remains unjustly distributed by race and class and is particularly dangerous to children. Examining a controversy in environmental health research ethics where researchers tested multiple levels of lead abatement in lead-contaminated households, I argue that the broader perspective on the ethics of environmental health research provided in the first part of this paper may have helped prevent this controversy. (shrink)

In the paper I point out to some problems of the traditional epistemology, i.e. epistemology oriented to search the foundations of cognitive evaluation. The epistemology of that kind which makes up the world outlook of science, I oppose the cultural studies reflection in a scientific knowledge practiced within one of the humanities domains of knowledge, for example, the theoretical history of science, which is limited in its cognitive tasks to the descriptive, reconstructive and explanatory study of science.

This book is about time and its powerful influence on our personal and collective daily life. It presents the most comprehensive and up-to-date overview of contemporary knowledge on temporal psychology inspired by Zimbardo's work on Time Perspective (TP). With contributions from renowned and promising researchers from all over the globe, and at the interface of social, personality, cognitive and clinical psychology, the handbook captures the breadth and depth of the field of psychological time. Time perspective, as the way people construe (...) the past, the present and the future, is conceived and presented not only as one of the most influential dimensions in our psychological life leading to self-impairing behaviors, but also as a facet of our person that can be de-biased and supportive for well-being and happiness. Written in honor of Philip G. Zimbardo on his 80th birthday and in acknowledgement of his leading role in the field, the book contains illustrations of the countless studies and applications that his theory has stimulated, and captures the theoretical, methodological and practical pathways he opened by his prolific research. (shrink)

Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee (...) members, and study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process. In our findings, we describe three interrelated themes related to the consent process: words and regulation; reimbursement, suspicions, and joining; and responsibilities. In general, stakeholders had highly varied perspectives of nghiên cứu and researchers used varying levels of detail regarding all aspects of the study in the consent process to build trust with and/or promote potential research participants’ choices about taking part in research. Findings additionally highlight how researchers felt that offering financial reimbursements in a hospital setting, where payment for services was routine, would be unfamiliar to participants and could raise suspicions about the research. Participants, however, focused their discussions on reimbursement or alternative reasons for joining the study, such as health related benefits or altruism. Finally, participants often relied on their physician to help them decide about joining a study or not. Further research is needed to understand how researchers and participants make sense of and practice consent, and how that impacts participants’ decision-making about research participation. To promote valid consent within this context, it is important to engage with hospital-based trial communities as a whole. The data from this study will inform future research on consent, guide the revisions of consent related policies within our research sites and point to several larger issues surrounding researcher-participant expectations, communication, and trust. (shrink)

For many decades, access to human biological samples, such as cells, tissues, organs, blood, and sub-cellular materials such as DNA, for use in biomedical research, has been central in understanding the nature and transmission of diseases across the globe. However, the limitations of current ethical and regulatory frameworks in sub-Saharan Africa to govern the collection, export, storage and reuse of these samples have resulted in inconsistencies in practice and a number of ethical concerns for sample donors, researchers and (...) class='Hi'>research ethics committees. This paper examines stakeholders’ perspectives of and responses to the ethical issues arising from these research practices. (shrink)

Güss, Tuason, and Devine (2020) recently provide an opinion concerning problems with police reports as data source from a researchers' perspective. Based on their research project using police reports, they report their experiences with research using this data type.According to the authors, the first problem concerns the limited access to police reports and second problem arises from poor the quality of police reports. Their experiences stem from the United States of America, and it seems that police reports as (...) a data source did not meet the researcher's expectations. At first glance, one might assume that researchers would find a comparable situation regarding police reports in Germany as well (and probably everywhere).The first problem highlighted by Güss et al. derives, not surprisingly, from the access to police data in general. Most recently, Geujges and Terizakis (2022) report experiences from their own research project in several federal states of Germany comparable to those of Güss et al. (2020). Similarly to the United States, Germany is federally organized. By constitution (Art. 30 GG), the sixteen federal states execute governmental authority by sixteen state polices and release different police laws and specific regulations that determine practical police work and consequently the access to police data. Moreover, the willingness of police organizations to support external (independent) research seems to differ both between federal states and within federal sta... (shrink)

This article describes research-based role-play on academic integrity. In the role-play, doctoral students negotiated the revision of an institutional integrity policy representing different groups of academics and students. On the one hand, role-play as a teaching method and learning activity demonstrated the difficulty of accommodating different perspectives; on the other, it showed the power and necessity of negotiation in matters that involve value judgments. The role-play is described in detail along with its underlying pedagogical foundations and its contextualisation (...) in a doctoral summer school where it took place. The purpose of the article is to describe how academic integrity was approached through role-play and to discuss theoretical and pedagogical foundations of role-play in teaching academic integrity. Although the article does not describe empirical research on role-play as a teaching method, it demonstrates how role-play in teaching academic integrity was developed based on prior research on the topic. (shrink)

The purpose of this article is to illuminate the conceptualisations and applications of the Belmont Report’s key ethical principles of respect for persons, beneficence, and justice based on a document analysis of five of the most relevant disciplinary guidelines on internet research in the social sciences. These seminal documents are meant to provide discipline-specific guidance for research design and implementation and are regarded as key references when conducting research online. Our analysis revealed that the principles of respect (...) and beneficence were explicitly conveyed in the documents analysed, offering nuanced interpretations on issues of informed consent, privacy, and benefits and risks as well as providing recommendations for modifying traditional practices to fit the online setting. However, the invocations of the principle of justice were rather implicit and reflect an important shift from the Belmont Report’s protectionist ethical position towards more situational and dialogic approaches. With the rapidly evolving nature of internet technologies, this analysis is projected to contribute to the ongoing developments in research ethics in the social sciences by outlining the tensions and implications of the use of the internet as a methodological tool. We also seek to provide recommendations on how disciplinary associations can proceed to facilitate ethically sensitive internet research. (shrink)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews (...) were conducted with RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews (...) were conducted with RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen (...) participants, study staff and with individuals who refused to participate. In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

The purpose of this research was to understand institutional review board (IRB) challenges regarding youth-focused research submissions and to present advice from administrators. Semistructured self-report questionnaires were sent via e-mail to administrators identified using published lists of universities and hospitals and Internet searches. Of 183 eligible institutions, 49 responded. One half indicated they never granted parental waivers. Among those considering waivers, decision factors included research risks, survey content, and feasibility. Smoking and substance abuse research among children (...) was generally considered more than minimal risk. These findings are consistent with those from a study conducted by Mammel and Kaplan (1995), which investigated IRB practices concerning protocols involving adolescent participants. IRBs and investigators need to become aware of regulations' flexibility to ensure adequate participant protection. Investigators need to limit jargon and assumptions about participants' understanding of research objectives. (shrink)

Die individuellen und gesellschaftlichen Folgen des demographischen Wandels rücken moralische Fragen, die den angemessenen Umgang mit älteren Menschen und die sinnvolle Gestaltung des Lebens im Alter betreffen, verstärkt in den Mittelpunkt öffentlicher Aufmerksamkeit sowie medizin- bzw. pflegeethischer und gesundheitspolitischer Auseinandersetzungen. Allerdings wird das Altern als Prozess und das höhere Alter als Lebensphase in vielen dieser medizin- bzw. pflegeethischen und gesundheitspolitischen Debatten zumeist lediglich unter dem spezifischen Gesichtspunkt der jeweils erörterten Praktiken, Fragestellungen und Problemlagen thematisiert. Eine Betrachtung, die diese verschiedenen konkreten (...) Praxis- und Diskussionskontexte übergreift, das in ihnen jeweils vorausgesetzte Verständnis des Alter(n)s als solches thematisiert und in seiner Bedeutung für die ethische Fachdiskussion grundsätzlich reflektiert, findet dagegen kaum statt. Die Arbeitsgruppe „Altern und Ethik“ in der Akademie für Ethik in der Medizin soll zur Entwicklung einer solchen grundlegenderen und umfassenderen Betrachtungsweise beitragen. Der vorliegende Beitrag gibt einen ersten orientierenden Überblick über die zentralen Themenschwerpunkte, Problemstellungen und Kontroversen in den aktuellen medizin- bzw. pflegeethischen und gesundheitspolitischen Diskursen um das Alter(n) und markiert offene Fragen und Forschungsdesiderate. Wie sich dabei zeigt, kann eine eingehendere Auseinandersetzung mit dem Alter(n) nicht nur den einschlägigen alter(n)sbezogenen Fachdebatten zu fundierteren Perspektiven verhelfen, sondern auch der ethischen Diskussion insgesamt wichtige Impulse im Hinblick auf ihre anthropologischen Grundlagen und ihren normativen Bezugsrahmen vermitteln. (shrink)

This study explored perceived benefits and risks of participation in HIV research among 33 female sex workers in Tecún Umán, Guatemala. Stigma associated with sex work and HIV was a critical barrier to research participation. Key benefits of participation included access to HIV/sti prevention and testing, as well as positive and trusting relationships between sex workers and research teams. Control exerted by managers had mixed influences on perceived research risks and benefits. Results underscore the critical need (...) for HIV investigators to develop population-tailored procedures to reduce stigma; engage managers; and reinforce trusting, reciprocal relationships between sex work communities and researchers. (shrink)

The article concentrates on answering the main question to be addressed, as stated in its title: which psychology serves us best? In order to achieve this goal, we pursue possible answers in history of psychology of religion and its interdisciplinary relationships with its sister disciplines, anthropology of religion and religious studies, resulting with sketching a typology of the main attitudes towards conceptualising psycho-cultural interface, prevalent among psychologists: the Universalist, the Absolutist and the Relativist stances. Next chosen examples from the field (...) of applied psychology are presented, as the role of the cultural factor within the history of Diagnostic and Statistical Manual of Mental Disorders’ development is discussed alongside presenting research on the phenomenon of ‘hearing voices’, in order to show the marked way for the future – the importance of including the cultural factor in psychological research on religion. (shrink)

Doing phenomenological research entails a complex process that is only minimally published in scientific journals. What is often missing reflects how being in research calls into question the researchers themselves. Anyone who has conducted qualitative empirical research knows that personal engagement does not come at no cost; there are multiple pedagogical and professional practice gains. This article’s aim is to share the phenomenology behind phenomenology: the reflection and personal experience of doing/being in phenomenological research and the (...) personal narrative of what this experience has meant concerning the authors' own context: health care and nursing. Taking advantage of a conducted research exploring the lived experience of family caregivers of hematological patients assisted at home, we propose considerations about the perceived epistemic and cognitive gains, the formative and personal/professional sequels of having been reflective participants of phenomenologically oriented research. (shrink)

Recruiting adolescents into smoking cessation studies is challenging, particularly given institutional review board (IRB) requirements for research conducted with adolescents. This article provides a brief review of the federal regulations that apply to research conducted with adolescents, and describes researchers' experiences of seeking IRB approval for youth cessation research. Twenty-one researchers provided information. The most frequently reported difficulty involved obtaining parental consent. Solutions to commonly reported problems with obtaining IRB approval are also identified. Waivers of parental consent (...) can facilitate recruitment of youths into studies; however, researchers must ensure that their protocols comply with federal regulations when requesting a waiver. (shrink)

Alzheimer's disease remains the most common form of dementia. Dementia symptoms vary depending on individual personality, life experience, and social and cultural influences. As dementia progresses, involvement of multi-disciplinary health care professionals is needed to manage the disease. Alzheimer research is progressing rapidly. While 5% of all Alzheimer's disease may be genetically determined, the majority is not. Susceptibility genes can reveal the risk of contracting Alzheimer's disease. Early life risk factors such as education, nutrition, and vascular disease may increase (...) the likelihood of dementia in later life. In the United States, two acetylcholinesterase inhibitors have been approved as cognitive enhancers. Possible prevention and symptomatic treatment interventions have focused on estrogen replacement therapy, antioxidants, and anti-inflammatory medications. Research advances have improved the clinical management of dementia. Ethical implications to the patient, family, and society are multiple and remain challenging. (shrink)

Devices that record from and stimulate the brain are currently available for consumer use. The increasing sophistication and resolution of these devices provide consumers with the opportunity to engage in do-it-yourself brain research and contribute to neuroscience knowledge. The rise of do-it-yourself (DIY) neuroscience may provide an enriched fund of neural data for researchers, but also raises difficult questions about data quality, standards, and the boundaries of scientific practice. We administered an online survey to brain–computer interface (BCI) researchers to (...) gather their perspectives on DIY brain research. While BCI researcher concerns about data quality and reproducibility were high, the possibility of expert validation of data generated by citizen neuroscientists mitigated concerns. We discuss survey results in the context of an established ethical framework for citizen science, and describe the potential of constructive collaboration between citizens and researchers to both increase data collection and advance understanding of how the brain operates outside the confines of the lab. (shrink)

Background There is now rising consensus that community engagement is ethically and scientifically essential for all types of health research. Yet debate continues about the moral aims, methods and appropriate timing in the research cycle for community engagement to occur, and whether the answer should vary between different types of health research. Co-design and collaborative partnership approaches that involve engagement during priority-setting, for example, are common in many forms of applied health research but are not regular (...) practice in biomedical research. In this study, we empirically examine the normative question: should communities be engaged when setting priorities for biomedical research projects, and, if so, how and for what purpose? Methods We conducted in-depth interviews with 31 members of the biomedical research community from the UK, Australia, and African countries who had engaged communities in their work. Interview data were thematically analysed. Results Our study shows that biomedical researchers and community engagement experts strongly support engagement in biomedical research priority-setting, except under certain circumstances where it may be harmful to communities. However, they gave two distinct responses on what ethical purpose it should serve—either empowerment or instrumental goals—and their perspectives on how it should achieve those goals also varied. Three engagement approaches were suggested: community-initiated, synergistic, and consultative. Pre-engagement essentials and barriers to meaningful engagement in biomedical research priority-setting are also reported. Conclusions This study offers initial evidence that meaningful engagement in priority-setting should potentially be defined slightly differently for biomedical research relative to certain types of applied health research and that engagement practice in biomedical research should not be dominated by instrumental goals and approaches, as is presently the case. (shrink)

This article starts off with a historical section showing that deep disagreements among notions of social and political justice are a characteristic feature of the history of political thought. Since no agreement or consensus on distributive justice is possible, the article argues that political philosophers should – instead of continuously proposing new normative theories of justice – focus on analyzing the reasons, significance, and consequences of such kinds of disagreements. The next two sections are analytical. The first sketches five possible (...) reasons for deep disagreements among notions of social and political justice. The second discusses the meta-ethical relevance of the lack of consensus on justice and rejects ethical realism and cognitivism based on the argument from deep disagreements. (shrink)

The ethical recruitment of participants with neurological disorders in clinical research requires obtaining initial and ongoing informed consent. The purpose of this study is to characterize barriers faced by research personnel in obtaining informed consent from research participants with neurological disorders and to identify strategies applied by researchers to overcome those barriers. This study was designed as a web-based survey of US researchers with an optional follow-up interview. A subset of participants who completed the survey were selected (...) using a stratified purposeful sampling strategy and invited to participate in an in-depth qualitative interview by phone or video conference. Data were analyzed using a mixed methods approach, including content analysis of survey responses and thematic analysis of interview responses. Over 1 year, 113 survey responses were received from US research personnel directly involved in obtaining informed consent from participants in neurological research. Frequently identified barriers to informed consent included: cognitive and communication impairments (e.g. aphasia), unrealistic expectations of research participants, mistrust of medical research, time constraints, literacy barriers, lack of available social support, and practical or resource-related constraints. Strategies to enhance informed consent included: involving close others to support participant understanding of study-related information, collaborating with more experienced research personnel to facilitate training in obtaining informed consent, encouraging participants to review consent forms in advance of consent discussions, and using printed materials and visual references. Beyond conveying study-related information, researchers included in this study endorsed ethical responsibilities to support deliberation necessary to informed consent in the context of misconceptions about research, unrealistic expectations, limited understanding, mistrust, and/or pressure from close others. Findings highlight the importance of training researchers involved in obtaining informed consent in neurological research to address disease-specific challenges and to support the decision-making processes of potential research participants and their close others. (shrink)

With the proliferation of networked electronic communication came daunting capabilities to collect, process, combine and store data, resulting in hitherto unseen transformational pressure on the concepts of trust, security and privacy as we know them. The Future Internet will bring about a world where real life will integrate physical and digital life. Technology development for data linking and mining, together with unseen data collection, will lead to unwarranted access to personal data, and hence, privacy intrusion. Trust and identity lie at (...) the basis of many human interactions and transactions, and societies have developed legitimate concern for privacy being essential for freedom and creativity. The burgeoning development of the Information Society, particularly during the past fifteen years, transcended the societal readiness to respond to the transformational change evoked by ICT. We have reached the eleventh hour for the preservation of trust and privacy as elements that can be transposed into our digital future. Europe has been at the forefront in recognizing the importance of privacy protection in relation to digital data, witness the advanced European legislation in this domain. The European Commission recognizes that appropriate measures need to combine technology development with legal means, user awareness and tools supporting data controllers to comply with law in an accountable and transparent way, and that empower users with a controlling stake in managing their personal data. Activities are underway at many levels. European RTD programmes play their role in supporting research in trustworthy ICT, privacy enhancing technologies, privacy-by-design in service layers as well as in networks, enabling technologies such as cryptography, and in generalized frameworks for trust and privacy-protective identity management. (shrink)

This article starts off with a historical section showing that deep disagreements among notions of social and political justice are a characteristic feature of the history of political thought. Since no agreement or consensus on distributive justice is possible, the article argues that political philosophers should – instead of continuously proposing new normative theories of justice – focus on analyzing the reasons, significance, and consequences of such kinds of disagreements. The next two sections are analytical. The first sketches five possible (...) reasons for deep disagreements among notions of social and political justice. The second discusses the meta-ethical relevance of the lack of consensus on justice and rejects ethical realism and cognitivism based on the argument from deep disagreements. (shrink)

Gene‐editing research is a complex science and foreign in most communities including Botswana. Adopting a qualitative deliberative framework with 109 participants from 7 selected ethnic communities in Botswana, we explored the perceptions of local communities on cultural values, norms, and beliefs that may motivate or deter likely participation in the use of gene‐editing related research. What emerged as the ethnic community's motivators for research participation include the potential for gene‐editing technologies to promote access to individualized medications, and (...) the possibility of protecting family members from genetic related diseases. Deterrents for research participation include cultural values such as implications of lineage for chieftainship, trust, fear or anxiety, uncertainty, and sensitivity on the use of gene‐editing. Findings of our study have implications for continuous engagement with local communities to explore potential ways of addressing cultural sensitivities that can further deter their participation in future gene‐editing related research. (shrink)