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when its participatory the goal is ultimately to do your best to solve the problem of that one person
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understand the agency of the people that are the subject of the data, make it so it benefits them
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ethics throughout entire research path, meaning and purpose
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incorporating critical ethics and frameworks
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Greek ethos meaning character, habit, dwelling, way of being, disposition, way of approaching the world
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in research there are common principles it aligns with
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what kind of researcher do you want to be, what kind of person do you want to be
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any conversation is a chance to hold your power
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ethics in relation specifically to systemic, calculated harm
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often ethical milestones in the past are in relation to aftermath of harm (eg Nuremburg Code) rather than future-building - reactionary
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informed consent - includes clear and accessible information, no coercion, and ongoing, revocable consent
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consent is both a legal contract and an ongoing relationship of trust and care
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Declaration of Helsinki (1964) - weighing risk against benefits
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Belmont Report (1979) - respect, beneficence and justice
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exploitation under the name of science
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academia as a colonial institution itself and the need to deconstruct it throughout, new methodologies
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Institutional Review Boards established to oversee human research - example impetus for this is Tuskegee Syphilis Study (1932 - 1972)
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Drug testing regulations came from the effects of thalidomide in pregnancy
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by the mid-20th century ethical considerations shift to social sciences, humanities, cultural space
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positionality and power dynamics between researchers and participants
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research is never neutral
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who speaks and who listens, what is considered knowledge
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what do we owe each other, what can we give each other
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holding uncertainty and complexities and sitting in it
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no longer necessarily ‘experimenting with bodies’ but foundationally that still happens all the time actually
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rise of University Research Ethics Committees modelled on IRBs, through the 1990s
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National Committee for Research Ethics in the Social Sciences and Humanities released first guidelines in 1993, emphasising respect for cultural norms and participant autonomy
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ethics submission is the core of methodology when working with subjects of equalities and justice
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‘do no harm’ includes psychological, social and reputational harm - embarrassment, discomfort and misrepresentation
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privacy and confidentiality as respect, as care
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you can’t pass on that trust, details carry risk
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upfront clarity on any claims or guarantees of anonymity, do they want to be seen or unseen
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respect for the agency of individuals under all circumstances
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being honest about your goals, methods and affiliations to everyone involved - those your research touches is the primary audience, those who are systemically disempowered
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‘what is going to happen to my story?’
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in autoethnography you’ll be more cognizant of this question too because its your own story
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pretending ethics are universal is a kind of violence
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unlearning, undoing, switching framework if it doesn’t fit the people you’re working with
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begin with listening, avoiding extractive modes
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reflexivity - ethics as process
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Digital Modernity (1960s–1980s), new challenges developing with computing, IP and surveillance, profitable data, early networks
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Digital Post-Modernity - internet, algorithms, disinformation and big data
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sensitive data moves from name/contact/demographic to detailed metadata and fingerprinting
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blurring of public and private data online
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emerging organisations eg Association of Internet Researchers developing guidelines, but not keeping pace
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AI ethics
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not inherently less impactful when not meeting participants directly
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misrepresentative data and excluded users are still collateral - who suffers as a result of what you’re studying, it is not disconnected
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avoiding ‘styling’ harm, what shouldn’t be abstracted, and whose pain is legible
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what you choose not to do - ‘decide’ - killing other options - resolving into a singular choice
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critical enquiries on sensitive material can create new harms - how to work with trauma
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people as gateways to systems, situated knowledges of those implementing policy or observing contradictions, silent actors caught in hierarchies
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infrastructural data - NDAs, internal policy constraints, legal obligations, moral conflicts, loyalty and safety
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from subjects to co-creators - beyond consent - agency and authorship
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shared ownership/authorship
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tokenistic use of ‘participation’, participation without power is extraction