Ways of Knowing When Research Subjects Care

Ways of Knowing When Research Subjects Care Dorothy Howard Lilly Irani Communication & Design Lab Communication & Design Lab San Diego, CA San Diego, CA [email protected] [email protected] ABSTRACT 1 INTRODUCTION This paper investigates a hidden dimension of research with Research subjects rarely have the chance to reflect on their real world stakes: research subjects who care – sometimes experiences of participating in research in the worlds where deeply – about the topic of the research in which they partic- researchers discuss, debate, and reflect. The voices and re- ipate. They manifest this care, we show, by managing how flections of researchers, on the other hand, are common. they are represented in the research process, by exercising Yet subjects of research certainly have situated knowledge politics in shaping knowledge production, and sometimes in – knowledge born of their practices and social positionality experiencing trauma in the process. We draw first-hand re- [70]. They also have their own projects – projects in which flections on participation in diversity research on Wikipedia, researchers may be an instrument. transforming participants from objects of study to active ne- There are many reasons why participants in human-computer gotiators of research process. We depict how care, vulnerabil- interaction (HCI) research may have interests, needs, and ity, harm, and emotions shape ethnographic and qualitative desires beyond offering themselves as a repository of expe- data. We argue that, especially in reflexive cultures, research rience or a specimen of practice. People might participate subjects are active agents with agendas, accountabilities, and because they are passionate or curious about technological political projects of their own. We propose ethics of care and futures and want to explore how those futures get made; collaboration to open up new possibilities for knowledge this may interest them more than the particular domestic, production and socio-technical intervention in HCI. work, or social technologies of any given research study or experiment. They may care about a social media platform CCS CONCEPTS such as Facebook and see research participation as an op- • Human-centered computing → Collaborative and so- portunity to advocate for their own needs or network with cial computing; technology professionals. Anthropologists have recognized the way research can function not only as an encounter or KEYWORDS an opportunity to observe, but as a form of collaboration that Qualitative Methods, Online Communities, Ethics, Care, Fem- transforms researcher and researched in the process [121]. inism, Gender What researchers produce may not be all that is produced in the researcher-subject encounter. ACM Reference Format: The first author was involved in Wikipedia for years as Dorothy Howard and Lilly Irani. 2019. Ways of Knowing When an editor, as a event organizer, and as someone who worked Research Subjects Care. In CHI Conference on Human Factors in on diversity. In this position, she, like many others, became Computing Systems Proceedings (CHI 2019), May 4–9, 2019, Glasgow, deeply familiar with waves of scholarly research into gender Scotland UK. ACM, New York, NY, USA, 16 pages. https://doi.org/ dynamics in Wikipedia. She participated in not one, but ten 10.1145/3290605.3300327 interviews that positioned her as an informant on Wikipedia editors’ experiences. Far from catharsis, she found herself Permission to make digital or hard copies of all or part of this work for laboring to support researchers, to explain sometimes painful personal or classroom use is granted without fee provided that copies experiences, and to speak about what she had learned while are not made or distributed for profit or commercial advantage and that respecting that some stories were not hers to tell. This paper copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than the author(s) must is a meditation on the collaborative and ethical possibilities be honored. Abstracting with credit is permitted. To copy otherwise, or of qualitative research, research which informs the policy, republish, to post on servers or to redistribute to lists, requires prior specific design, and maintenance of high stakes, real world systems. permission and/or a fee. Request permissions from [email protected]. Our case study is Wikipedia. CHI 2019, May 4–9, 2019, Glasgow, Scotland UK HCI researchers have previously explored the ways that © 2019 Copyright held by the owner/author(s). Publication rights licensed research methodologies shape ethics. Ethics are modes of to ACM. ACM ISBN 978-1-4503-5970-2/19/05...$15.00 making decisions, and they are sometimes applied to under- https://doi.org/10.1145/3290605.3300327 stand how research impacts various actors and institutions at different predictable stages in the research process like 2 RELATED WORK: ETHICS, VALUES, POLITICS, informed consent, and in situ, as sometimes unpredictable AND CARE IN HCI scenarios arise [19, 24]. In this paper, we examine HCI re- Ethics search methods and ethics in studies that involve everyday Very broadly, ethics primarily concerns the relationship be- people in the production of knowledge – human subjects in tween intentions and consequences of ones’ actions. In phi- ethics broad parlance. But we do more than this; we explore losophy, for example, ethics can involve evaluating what how people assert themselves as knowing subjects in the is good according to different criteria. Within HCI, calls research process and attempt to disentangle how research for ethics can include ethics of research practice, as well subjects manage accountability and representation, as well as ethical evaluations of particular technologies such as AI, as the emotional labor that they may be asked to do. We find health activity trackers, or product design [19, 56, 65, 110]. that research participants have an essential and important Bruckman identifies a few recurrent ethical principles in HCI role in managing ethical accountabilities. These accountabil- research: obtaining informed consent, ‘do no harm’, privacy, ities are also hardly static, but socially constructed during and the distribution of risks, costs, and benefits [24]. research encounters as the roles of investigators and par- As technologies rework terrains of social interactions, re- ticipants are negotiated. The motivations people have for searchers must consider possible risks, harms, and conse- participating in qualitative studies work at multiple scales, quences for research subjects. Search engines or anonymized including the personal, interpersonal, and political – as re- open data sets might still enable committed searchers to dis- search disperses through different publics in the short and cover subject identities in ways not possible two decades long-term [34, 113]. We build on accounts of research that ago [114, 129]. Chatrooms and forums offer visibility, but re- understand it as ethical and political – in the knowledge it searchers cannot always rely on precedent to determine what produces [82, 135], in the relations it creates or reinforces constitutes public versus private spaces in networked set- [109], and in the politics it can make possible [70]. tings, or when informed consent is necessary[81]. Questions We offer an extended reflection on the experiences ofone of ethics often focus on dilemmas researchers face acting to participant, the first author, who became a frequent con- reduce potential harm to subjects of research or implicated tributor to research on gender and Wikipedia, and use this communities. Many have converged on how institutional grounded experience to open up questions about common review boards (IRB) procedures and formal guidelines can practices by which we engage research subjects – practices manage procedural ethics, including potential risks and harm, we teach, we often take for granted, and to which we have amid emerging digital and socio-technical research settings been habituated. We examine research as a process of com- [25]. ing to know the world – a world we inhabit as well – but Works drawing on feminist, postcolonial, and decolonial examine the kinds of subjectivities, social relations, and pos- approaches emphasize that these judgments and dilemmas sibilities for collaboration enabled or foreclosed by common are produced in part by the ways researchers and participants qualitative research practices [135]. By subjectivity, we mean relate to one another, often differentially privileged by power how people interpret, act, and make sense of the world us- structures, institutions, identities, and histories of coloniality ing the tools they carry from prior experiences and cultural [82, 113]. This paper takes up this concern for ethics amidst backgrounds. power relations between researcher and subject. However, This paper’s focus on the experiences of participants in our contribution is to demonstrate ethical dilemmas from Wikipedia research produces insight into how people gener- the position of a research subject. ate knowledge about platforms and practices in which they are deeply invested. These investments might be technical, Values social, or emotional. Such practices might include social media use, online community participation, or participation in Another way HCI practitioners have evaluated social im- making and design. pact and ethics is in terms of human values [28, 85]. In a We extend these reflections to imagine

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