Privacidad de la información en la investigación social de naturaleza cualitativa: la transición hacia el mundo digital / Privacy of information in qualitative social research: the transition to the digital world / Privacidade da informação na pesquisa social qualitativa: a transição para o mundo digital

Resumen: Este texto aborda el problema de la privacidad de la información en la investigación social de tipo cualitativa que se desarrolla en el contexto del mundo digital. Para ello, se revisa el concepto de privacidad desde una mirada analógica hacia su incorporación en el plano digital con la figura de la privacidad de la información y algunos elementos de la hermenéutica de Gadamer. Primero, se revisa el plano analógico y ético de la privacidad. Luego, se revisa el potencial de la información, la distinción entre información privada y sensible y su aplicabilidad a la investigación social mediante los conceptos de confianza y seguridad. Finalmente se esboza una propuesta para una privacidad renovada que propone rescatar la intersubjetividad que se construye en la relación del participante de la investigación con el investigador.

Abstract: This text addresses the problem of information privacy in qualitative social research developed in the context of the digital world. For this purpose, the concept of privacy is reviewed from an analogical view towards its incorporation in the digital plane with the figure of information privacy and some elements of Gadamer's hermeneutics. First, the analogical and ethical plane of privacy is reviewed. Then, the potential of information, the distinction between private and sensitive information and its applicability to social research through the concepts of trust and security are reviewed. Finally, we outline a proposal for a renewed privacy that proposes to rescue the intersubjectivity that is built in the relationship between the research participant and the researcher.

Resumo: Este texto aborda o problema da privacidade da informação na investigação social qualitativa no contexto do mundo digital. Para o fazer, revê o conceito de privacidade de um ponto de vista analógico para a sua incorporação no plano digital com a figura da privacidade da informação e alguns elementos da hermenêutica de Gadamer. Primeiro, o plano analógico e ético da privacidade é revisto. Em seguida, o potencial da informação, a distinção entre informação privada e informação sensível e a sua aplicabilidade à investigação social através dos conceitos de confiança e segurança são revistos. Finalmente, esboça uma proposta para uma privacidade renovada que se propõe resgatar a intersubjetividade que é construída na relação entre o participante da pesquisa e o pesquisador.

Meaningful measures of human society in the twenty-first century.

Science rarely proceeds beyond what scientists can observe and measure, and sometimes what can be observed proceeds far ahead of scientific understanding. The twenty-first century offers such a moment in the study of human societies. A vastly larger share of behaviours is observed today than would have been imaginable at the close of the twentieth century. Our interpersonal communication, our movements and many of our everyday actions, are all potentially accessible for scientific research; sometimes through purposive instrumentation for scientific objectives (for example, satellite imagery), but far more often these objectives are, literally, an afterthought (for example, Twitter data streams). Here we evaluate the potential of this massive instrumentation-the creation of techniques for the structured representation and quantification-of human behaviour through the lens of scientific measurement and its principles. In particular, we focus on the question of how we extract scientific meaning from data that often were not created for such purposes. These data present conceptual, computational and ethical challenges that require a rejuvenation of our scientific theories to keep up with the rapidly changing social realities and our capacities to capture them. We require, in other words, new approaches to manage, use and analyse data.

A call for structured ethics appendices in social science papers.

Ethics in social science experimentation and data collection are often discussed but rarely articulated in writing as part of research outputs. Although papers typically reference human subjects research approvals from relevant institutional review boards, most recognize that such boards do not carry out comprehensive ethical assessments. We propose a structured ethics appendix to provide details on the following: policy equipoise, role of the researcher, potential harms to participants and nonparticipants, conflicts of interest, intellectual freedom, feedback to participants, and foreseeable misuse of research results. We discuss each of these and some of the norms and challenging situations of each. We believe that discussing such issues explicitly in appendices of papers, even if briefly, will serve two purposes: more complete communication of ethics can improve discussions of papers and can clarify and improve the norms themselves.

Transnational policy migration, interdisciplinary policy transfer and decolonization: Tracing the patterns of research ethics regulation in Taiwan.

Research ethics regulation in parts of the Global North has sometimes been initiated in the face of biomedical scandal. More recently, developing and recently developed countries have had additional reasons to regulate, doing so to attract international clinical trials and American research funding, publish in international journals, or to respond to broader social changes. In Taiwan, biomedical research ethics policy based on 'principlism' and committee-based review were imported from the United States. Professionalisation of research ethics displaced other longer-standing ways of conceiving ethics connected with Taiwanese cultural traditions. Subsequently, the model and its discursive practices were extended to other disciplines. Regulation was also shaped by decolonizing discourses associated with asserting Indigenous peoples' rights. Locating research ethics regulation within the language and practices of public policy formation and transfer as well as decolonization, allows analysis to move beyond the self-referential and attend to the social, economic and political context within which regulation operates.

"se eu soubesse, não teria vindo": implicações e desafios da entrevista qualitativa / "si supiera, no estaría aquí": implicaciones y desafíos de la entrevista cualitativa / "if i had known, i wouldn't have come": implications and challenges of qualitative interview

RESUMO Por se tratar de uma técnica que privilegia a investigação do sentido, a entrevista é uma das ferramentas mais utilizadas em pesquisas qualitativas. Faz-se necessária, portanto, uma reflexão sobre seu uso. O objetivo deste artigo é discutir os desafios, para a equipe de pesquisa, na utilização da entrevista qualitativa e seus possíveis impactos à pessoa entrevistada. A análise, sustentada em trechos de entrevistas extraídos de diferentes projetos, debruçou-se sobre dois aspectos: 1. a relação entre pesquisadores e participantes; e 2. possíveis implicações para entrevistados. Discute-se que a entrevista se constitui no campo intersubjetivo pesquisador-participante, com variabilidades e influências contextuais, que estão para além da possibilidade de controle total sobre o processo, evidenciando o papel ativo de ambos no acontecimento da entrevista. A respeito das implicações, observa-se que a entrevista possibilita um momento oportuno para a expressão de experiências não reveladas em outros contextos e que, ao revisitar sua história, a percepção sobre ela e sobre si pode se alterar ao longo da narração. Estes aspectos fazem com que a entrevista seja momento de constituição de sentidos e não de mero relato, o que pode também implicar mobilização de afetos. Diante dessas questões, nota-se que a entrevista pode oferecer, concomitantemente, risco de sofrimento e possibilidade de ressignificação para os participantes. Concluímos que, tanto do ponto de vista ético quanto da viabilidade da pesquisa, é necessário para a condução da entrevista conhecimento teórico-metodológico, acolhimento e empatia, bem como disponibilidade e confiança por parte de quem narra sua história.

RESUMEN Por tratarse de una técnica que privilegia la investigación del sentido, la entrevista es una de las herramientas más utilizadas en investigaciones cualitativas, configurándose necesario la reflexión sobre su uso como instrumento. El objetivo del presente artículo es discutir los desafíos para el investigador en la entrevista cualitativa y posibles impactos para el participante-entrevistado. El análisis, fundamentada en extractos de entrevistas retirados de diferentes proyectos, se centró en dos aspectos: 1. La relación entre investigador y participante y 2. Posibles implicaciones para el entrevistado. Se discute que la entrevista se constituye en el campo intersubjetivo investigador-investigado, con variabilidades e influencias contextuales que están más allá de la posibilidad de control total del investigador sobre el proceso, evidenciando el papel activo de ambos en el acontecimiento de la entrevista. Con respeto a las implicaciones, se observa que la entrevista es oportunidad de expresar experiencias no reveladas en otros contextos y que, al revisar su historia, la percepción del narrador sobre ella y sobre sí mismo puede cambiar. Estos aspectos hacen de la entrevista momento de constitución de sentidos y no mero relato, lo que puede también implicar en la movilización de afectos no elaborados. Ante estas cuestiones, se nota que la entrevista puede ofrecer concomitantemente riesgo de sufrimiento y posibilidad de resignificación para el participante. Concluimos que, tanto desde el punto de vista ético, como de la viabilidad de la investigación, es necesario al entrevistador no sólo el conocimiento teórico-metodológico, sino también acogida y empatía, y por parte del participante, disponibilidad y confianza.

ABSTRACT Since the interview is a technique that favors the investigation of meaning, it is one of the most used tools in qualitative research, requiring a study on its uses. This article aimed to discuss the challenges for the researcher in the use of the qualitative interview and possible implications for the interviewed. Our analysis, based on excerpts from interviews drawn from different research projects, focused on two aspects: 1. The relationship between researcher and participant, and 2. Possible implications for the interviewee. We argue that the researcher-participant intersubjective field constitutes the interview, with contextual variability and influences that preclude the possibility of complete control of the process by the investigator, conferring an active role to both interactors. Concerning the implications for the interviewee, we point out that the interview is an opportunity for the participant to reveal previously untold experiences, and that, by revisiting his/her history; the narrator may change his/her perspective about it and about him/herself. These aspects turn the interview into a moment of sensemaking and not a mere report, which may also imply the mobilization of unelaborated affections. Given these issues, we note that the interview may concomitantly present to the participant the risk of suffering as well as the possibility of making new understandings about their experiences. We conclude that from an ethical point of view, considering as well the viability of the research, the interviewer must display not only the required theoretical and methodological knowledge but also acceptance and empathy, whereas the participant must show availability and trust.

The Role of Inclusion Benefits in Ethics Committee Assessment of Research Studies.

The relationship between risks and benefits is central to the ethics of research involving human participants. Traditionally, to be ethically justifiable, risks should be reasonable in relation to anticipated benefits (if any) to subjects and to the potential social benefits resulting from research. This calculus is being further complicated by findings from an increasing number of social science studies that reveal that prospective and actual research participants frequently describe various types of inclusion benefits (for example, personal benefits such as access to or improved health care, increased knowledge about their disease or condition, and greater solidarity with the local community) as important to them. What is the ethical significance of such inclusion benefits, particularly those nonmedical in nature, for research ethics committees' risk-benefit assessment of research studies? We argue that, unless participants are clearly mistaken in their perceptions, ethics committees should take these types of inclusion benefits into account, and we suggest a few ways this might look in practice.

Compliance with National Ethics Requirements for Human-Subject Research in Non-biomedical Sciences in Brazil: A Changing Culture?

Ethics regulation for human-subject research (HSR) has been established for about 20 years in Brazil. However, compliance with this regulation is controversial for non-biomedical sciences, particularly for human and social sciences (HSS), the source of a recent debate at the National Commission for Research Ethics. We hypothesized that for these fields, formal requirements for compliance with HSR regulation in graduate programs, responsible for the greatest share of Brazilian science, would be small in number. We analyzed institutional documents (collected from June 2014 to May 2015) from 171 graduate programs at six prestigious Brazilian universities in São Paulo and Rio de Janeiro, the states that fund most of the science conducted in Brazil. Among these programs, 149 were in HSS. The results suggest that non-compliance with standard regulation seems to be the rule in most of these programs. The data may reflect not only a resistance from scientists in these fields to comply with standard regulations for ethics in HSR but also a disciplinary tradition that seems prevalent when it comes to research ethics in HSR. However, recent encounters between Brazilian biomedical and non-biomedical scientists for debates over ethics in HSR point to a changing culture in the approach to research ethics in the country.

Morality and soap in engineers and social scientists: the Macbeth effect interacts with professions.

Several studies demonstrate that physical cleansing is actually efficacious to cope with threatened morality, thus demonstrating that physical and moral purity are psychologically interwoven. This so-called Macbeth effect has been explained, for example, by the conceptual metaphor theory that suggests an embodiment of the moral purity metaphor. Recent research draws attention to individual differences when using conceptual metaphors. The present study shows that the moral purity link interacts with different professions. Engineering and social science students were asked to hand copy a text in which the protagonist behaved in an immoral way (or in a moral way, control condition). Subsequently, they had to rate cleansing and other products. Both groups of participants showed higher ratings for cleansing products when hand copying the unethical story, but this Macbeth effect was significantly stronger for the group of engineering students. The results demonstrate that the Macbeth effect interacts with individual differences of the chosen profession. The outcome is discussed in terms of recent theories on individual differences in disgust sensitivity.

Epigenetics: ethics, politics, biosociality.

Background: Epigenetics is a burgeoning field of contemporary biosciences, which has attracted a lot of interest both in biomedical and in social sciences. Sources of data: Unsystematic literature analysis and retrospective mapping of highly cited work (source: Web of Science core collection) in the social sciences and humanities engaging with epigenetics. Areas of agreement: Epigenetics poses no new ethical issue over and above those discussed in relation to genetics. Areas of controversy: However, it encourages a different framing and reflexivity on some of the commonly held categories in the moral uptake of scientific discoveries. Growing points: Epigenetics presents us with normative questions that touch upon privacy, responsibility for individual health and for the well-being of future generations, as well as matters of health justice and equality of opportunities. Areas timely for developing research: Epigenetic thinking could help us adjust and refine the problem frames and categories that inform our ethical and political questions with a complex biosocial description of situations, of persons or actions.

A scoping review of reporting 'Ethical Research Practices' in research conducted among refugees and war-affected populations in the Arab world.

BACKGROUND: Ethical research conduct is a cornerstone of research practice particularly when research participants include vulnerable populations. This study mapped the extent of reporting ethical research practices in studies conducted among refugees and war-affected populations in the Arab World, and assessed variations by time, country of study, and study characteristics. METHODS: An electronic search of eight databases resulted in 5668 unique records published between 2000 and 2013. Scoping review yielded 164 eligible articles for analyses. RESULTS: Ethical research practices, including obtaining institutional approval, access to the community/research site, and informed consent/assent from the research participants, were reported in 48.2, 54.9, and 53.7% of the publications, respectively. Institutional approval was significantly more likely to be reported when the research was biomedical in nature compared to public health and social (91.7% vs. 54.4 and 32.4%), when the study employed quantitative compared to qualitative or mixed methodologies (61.7% vs. 26.8 and 42.9%), and when the journal required a statement on ethical declarations (57.4% vs. 27.1%). Institutional approval was least likely to be reported in papers that were sole-authored (9.5%), when these did not mention a funding source (29.6%), or when published in national journals (0%). Similar results were obtained for access to the community site and for seeking informed consent/assent from study participants. CONCLUSIONS: The responsibility of inadequacies in adherence to ethical research conduct in crisis settings is born by a multitude of stakeholders including funding agencies, institutional research boards, researchers and international relief organizations involved in research, as well as journal editors, all of whom need to play a more proactive role for enhancing the practice of ethical research conduct in conflict settings.

Ética de la investigación desde el pensamiento indígena: derechos colectivos y el principio de la comunalidad / Ethics of research from indigenous thinking: collective rights and the principle of comunalidad / Ètica de la investigació des del pensament indígena: drets col·lectius i el principi de la comunalitat

Desde hace unas décadas, son frecuentes las investigaciones científicas con pueblos indígenas en diversos campos del conocimiento: cuestiones genéticas, lingüísticas, jurídicas, etnográficas, investigaciones sobre sus plantas medicinales, sus ritos y tradiciones, entre otras. Es importante no solo abrir espacios de discusión y análisis para conocer aspectos regulatorios y éticos para su protección, sino para asumir dichas investigaciones desde sus cosmovisiones y epistemologías. Éstas son en esencia relacionales, con valores como pluralidad, diversidad, reciprocidad, complementariedad, compartencia. Todos estos valores se engloban en el principio de comunalidad, que reafirma la apuesta por los derechos colectivos de las poblaciones indígenas, más allá de la vivencia individual de los Derechos Humanos. Esta mirada diferente a la ética de la investigación es el objetivo de este artículo, como un campo aún por explorar

In the last few decades, scientific research with indigenous population has been more frequent in different fields: genetics, linguistics, legal, and ethnographic studies, research related to medicinal plants, their rites, and traditions, among others. For this reason it is important to know regulatory and ethical aspects for their protection, but also to assume these research from their world view and epistemologies. These are essentially relational, with values such as plurality, diversity, reciprocity, complementarity and sharing («compartencia»). All of these values are part of the commonality principle (comunalidad), which reaffirms the commitment to the collective rights of indigenous population, beyond the individual experiences of Human Rights. This different approach to research ethics is the objective of this article, as a field yet to explore

Des de fa dècades són freqüents les investigacions científiques amb poblacions indígenes en diversos camps del coneixement: qüestions genètiques, lingüístiques, jurídiques, etnogràfiques, investigacions sobre plantes medicinals, els seus rituals i tradicions, entre d’altres. És important no només obrir espais de discussió i anàlisi a fi de conèixer aspectes reguladors i ètics per a la seva protecció, sinó que cal, a més, plantejar aquestes investigacions des de les cosmovisions i epistemologies pròpies d’aquestes poblacions. Aquestes cosmovisions i epistemologies són, en essència, relacionals, i inclouen valors com ara la pluralitat, diversitat, reciprocitat, complementarietat i compartició. Tots aquests valors s’inclouen en el principi de comunalitat, que posa de relleu la defensa dels drets col·lectius de les poblacions indígenes, més enllà de la vivència individual dels Drets Humans. Aquesta mirada diferent en l’àmbit de l’ètica de la investigació és l’objectiu d’aquests article

Ethical Evaluation of Mental Health Social Research: Agreement Between Researchers and Ethics Committees.

The objective of this article is to compare various ethical issues considered by social scientists and research ethics committees in the evaluation of mental health social research protocols. We contacted 47 social scientists and 10 members of ethics committees in Mexico with two electronic national surveys that requested information from both groups related to the application of ethical principles in mental health social research. The results showed no significant difference between these groups in the value placed on the ethical issues explored. Based on this finding, we make proposals to strengthen the collaboration between the two groups.

Towards Multidisciplinary HIV-Cure Research: Integrating Social Science with Biomedical Research.

The quest for a cure for HIV remains a timely and key challenge for the HIV research community. Despite significant scientific advances, current HIV therapy regimens do not completely eliminate the negative impact of HIV on the immune system; and the economic impact of treating all people infected with HIV globally, for the duration of their lifetimes, presents significant challenges. This article discusses, from a multidisciplinary approach, critical social, behavioral, ethical, and economic issues permeating the HIV-cure research agenda. As part of a search for an HIV cure, both the perspective of patients/participants and clinical researchers should be taken into account. In addition, continued efforts should be made to involve and educate the broader community.

Controversias éticas en torno a la privacidad, la confidencialidad y el anonimato en investigación social / Ethical controversies involving privacy, confidentiality and anonymity in social research

El propósito de este artículo es mostrar algunas de las particularidades, alcances y limitaciones de la privacidad, la confidencialidad y el anonimato en el ámbito de la ética de la investigación en ciencias sociales. El presente artículo está organizado en tres apartados. En primer lugar, se definirán y distinguirán los conceptos de privacidad y confidencialidad y se mostrarán sus características singulares en investigación social. En segundo lugar, se analizarán algunos debates y críticas actuales en torno al anonimato. Finalmente, se examinarán los alcances y limitaciones al resguardo de la información y los desafíos que implican nuevos entornos de investigación social (AU)

The purpose of this article is to present some of the particularities, scope and limits of privacy, confidentiality and anonymity in the field of social sciences research ethics. The article is organized in three sections. Firstly, I define and distinguish the concepts of privacy and confidentiality, and their unique characteristics in social research. Secondly, I analyze some current debates and criticisms of anonymity. Finally, I examine some problems about the protection of information and the challenges involving new social research environments (AU)

Caring for nanotechnology? Being an integrated social scientist.

One of the most significant shifts in science policy of the past three decades is a concern with extending scientific practice to include a role for 'society'. Recently, this has led to legislative calls for the integration of the social sciences and humanities in publicly funded research and development initiatives. In nanotechnology--integration's primary field site--this policy has institutionalized the practice of hiring social scientists in technical facilities. Increasingly mainstream, the workings and results of this integration mechanism remain understudied. In this article, I build upon my three-year experience as the in-house social scientist at the Cornell NanoScale Facility and the United States' National Nanotechnology Infrastructure Network to engage empirically and conceptually with this mode of governance in nanotechnology. From the vantage point of the integrated social scientist, I argue that in its current enactment, integration emerges as a particular kind of care work, with social scientists being fashioned as the main caretakers. Examining integration as a type of care practice and as a 'matter of care' allows me to highlight the often invisible, existential, epistemic, and affective costs of care as governance. Illuminating a framework where social scientists are called upon to observe but not disturb, to reify boundaries rather than blur them, this article serves as a word of caution against integration as a novel mode of governance that seemingly privileges situatedness, care, and entanglement, moving us toward an analytically skeptical (but not dismissive) perspective on integration.