CAREB Breakout Session

“You Want to Study WHAT?” Vulnerable subjects and ethical issues in gender and sexuality research

Mary L. GrayMicrosoft ResearchIndiana University

Overview

• Ethics 101: Institutional Review Boards and their key regulatory guidelines

• Hurdles, hoops, and brick walls• Navigating red flags• Trouble-shooting & Q/A: An eye on the

future of critical ethnographic praxis (practice of theory and skill) in gender and sexuality studies

(not-so) Hidden agenda

• De-center digital media as default unit of analysis

• Focus on the medium can obscure the key element in ethnography: interactions (ppl, technologies, absences of technologies, missing ppl, etc)

• Call for interdisciplinary conversations– [cross-epistemological dialogue/ecumenism]

• Call for intradisciplinary conversations – [peer review]

• Identify fault lines/political economies of ethics in information, media+technology studies, and sexuality and gender studies

Ethics 101: U.S. Guiding Principles

1. Respect for persons (Autonomy) – individuals should be treated as autonomous agents and persons with diminished autonomy are entitled to protection

2. Beneficence – Human subjects should not be harmed and the research should maximize possible benefits and minimize possible harms.

3. Justice – the benefits and risks of research must be distributed fairly.

IRB 101: Coding the principles

• Code of Federal Regulations (aka the “Common Rule”)– Title 45 Public Welfare Department of

Health and Human Services Part 46 Protection of Human Subjects

– Four Subparts (A-D)• A (46.101)= IRB overview/review categories

(exempt, expedited, full); consent• B through D = regs for specific vulnerable

populations

Ethics 101: CA Guiding Principles1. Respect for persons (Autonomy) –recognizes

the intrinsic value of human beings….It encompasses the treatment of persons involved in research directly…and those who are participants because their data or human biological materials…are used in research. – In Canada = “free, informed, ongoing

consent” 2. Concern for welfare – the quality of that

person’s experience of life in all its aspects…. Other contributing factors to welfare are privacy and the control of information about the person…who was the source of the information or materials (group and community count!)

3. Justice – the obligation to treat people fairly and equitably…distributing the benefits and burdens of research participation.

[some] Hurdles, hoops, brick walls

[moving] Hurdles

• Securing consent in a crowd (in the cloud)– Is data-mining/SNS scraping human subjects

research? TBD

• Documenting consent– Screen names/avatars/Twitter handles/Mturk

IDs…eek

• Defining what constitutes a queer public space– What are my options??

• Scaring off ppl who are uncomfortable or dis-identify with categories on the consent form

Hoops

• Recording participants requires a record of consent

• Audio/video/screen capture might compromise confidentiality

• Authorship (particularly in textual communities) matters [kinda, sometimes]

• Archiving materials seen as compromising confidentiality

Brick walls• Minimal risk: “the probability and magnitude

of physical or psychological harm that is normally encountered in the daily lives, or in the routine medical, dental, or psychological examination of healthy persons.”

• Cultural norms construct stigma and risk• Vulnerable populations: subjects such as

pregnant women, fetuses, neonates, children, prisoners, handicapped or mentally disabled persons (diminished capacity to consent) – [aka…heaps of peeps!]

Navigating red flags

A case study

What did I do? [OITC’s ethnographic innards in a nutshell]

• 2001-2004 (19+ months) “in the field” with rural youth in KY and border states

• Multi-sited ethnography• Participant/observation among youth agencies,

peer networks, and LGBTQ youth advocates • In-depth, open-ended interviews with 34 youth

ages 14-24; informal interviews with 100+ youth/LGBTQ advocates

• Content analyses of websites, blogs, message boards for/produced by rural LGBTQ youth and allies

• Analytical tools: media studies, symbolic interactionism, STS, anthropology and queer studies of sexualities and genders, postcolonial studies [kitchen sink]

What did I ask?

1. Difference digital media make to youth negotiating a “queer” sense of sexuality and gender in the rural U.S.?

Broader concern: How are intimate identities organized vis-à-vis media in a modern era?

2. How young people do “queer identity work?”

sites and technologies

construction, negotiation, articulation of cultural meaning

support agencies, peers, and digital media

3. How is queer identity work placed, gendered, classed, and raced differently in the rural United States?

Basic research assumptions

• Genders and sexualities are constructed• No finite number of LGBTQ folks to be

“found” in rural places • Online interviewing and data as

“authentic” as face-to-face interactions/participant-observation

• Digital media = tools and locations for cultural production

• Focus: interactions, infrastructures, and processes not specific technologies [challenging media effects paradigm]

Red flag recap

• Seems risky (rural queer kids!?)• Rural LGBT-identifying and questioning

youth (14-24)—a vulnerable population

• Digital media use (youth online)• Waiver of parental consent• Waiver of written consent• Record/archive materials for oral

history archives

Red flag: participant access

• Hard to find rural queer and questioning youth?

• Internet finds some youth but makes it easier to ignore others

• Marginalizing those beyond access (or with troubling access) dulls ethnography’s edge = saturation

Red flag: Representative sampling

• No way to be sure of who is missed if your only interpretative window is the computer (this matters depending on your research question)

• Groups online can reproduce closed circles of peer networks skewing your data (again, depending on your research question) [aka bar problem]

• Ethical responsibility to strive for a “representative sample”

Red flags of access and representation issues bring up…

• How can we think about anonymity as data rather than an technological artifact (and how to get at it methodologically)?

• How do we investigate/unpack the privacy and anonymity that seems to infuse digital media with a special-ness?

• What are other search strategies for finding participants on the edges of my research focus?

• How do we critically account for the plasticity of ethical practice produced through our interactions?

Navigating red flags: Consent

• Waiver of written consent: 45 CFR 46.117(c)(1)—only link that could breach confidentiality/risk reputation

• Waiver of parental consent: 45 CFR 46.408(c)—consent not reasonable (discussion of sexual abuse, etc)

• Record/archive materials for oral history projects: separate consent checklist item with time guarantees (create data sets!!!!!!)

Plasticity of consent

Securing waiver of parental consent– I did secure waiver of parental consent from people

under 18 (afforded under the “Common Rule”)– Revoked 1 year in with change in IRB hierarchy– Permitted to talk with youth:

• at participating youth agency offices OR over a public agency phone via a toll free number

My concern?IRB mandated methodological remedies that could not address the complexities of new media fieldsites

• rural communities overwhelmingly lack local youth agency offices and public telephones

• New media access mitigated by class status

Navigating red flags: Vulnerability

• Rural LGBT-identifying and questioning youth (14-24)– Language of “mature minors” (site-

specific access to confidential health services ~= age of consent

– Conditions of vulnerability = justice in studying them

– Their lack of access to services

Producing vulnerability

Online encounters– IRB had few protocols re: working with

youth-oriented online materials—particularly posted or produced by youth

– Little sense that these documents might be connected to “live” youth

My concern? – How do I attend to analyzing participants’

creative work? – How can I ethically use this information

and in what venues?

Producing vulnerability [cont’d]

Online materials fell outside the attention span of my IRB…Why?– Data were simply read passively as web

content– Data seemed to keep me safely distanced

from interacting with youth. – IRB saw websurfing as innocuous, detached

from human subjectsMy solutions: – Skirted edge of what IRB deemed permissible

contact with youth in my fieldsite– Prompted by disciplinary ethical code of

anthropology in addition to IRB directives

Politics and fragility of knowledge

2 examples—consent and online encounters—show: – Nothing static about public vs. private ~ consent– IRBs strategically distance institutions from direct

engagement with research participants [uh oh ethnography]

– Researchers often collude in these maneuvers to gain approval for their projects [note: I did]

– Ethnography of digital media an important site/faultline– methodological crises serve as productive, reflexive

opportunities

Plasticity of vulnerability = politics and fragility that comprise scientific knowledge

see Appendix, OITC, for extended argument)

Navigating red flags: Digital media

• Help your institution define/write their policy• Association of Internet Researchers Ethics

wiki (www.ethics.AoIR.org)• 2012 Ethical decision-making and Internet

research by Annette Markham and Elizabeth Buchanan, w/ the AoIR Ethics Comm

• Discuss how you will ensure anonymity• Decide how you will attribute authorship vis-

à-vis anonymity• Argue your notions of co-presence,

publicness, and access—they are all relative!

More solutions

• Online materials as “voices” of participants (informed consent)

• Triangulation (boundary publics model)• Open-ended/minded pluralistic approach

(ethics as praxis)• Professional expectations of explicit and

intentional disclosure of ethical and methodological approaches

• Coordination of guidelines at Association level

• Create peer review groups in Depts and Schools

Conclusion: Trouble-shooting & Q/A

Trouble-shooting tips and tricks:• Start early (at least a year before you plan to do

the research)• Get letters of support from senior scholars (let

your IRB know your work is known)• Identify an ally in the IRB office and/or on the IRB• Talk in hypotheticals with an IRB program officer• Be explicit about risks, plans of action,

contingencies• IRB is not the enemy—they’re an overworked staff• Use their language (behavioral/biomed model)• Change the system/join the IRB/crowdsource your

ethics!!! [please ask me more about this!]

Lastly…

If there’s one thing you take away, let it be this:– Ethical dilemmas are an index of

methodological flux/growth in a field of inquiry

– Ethical conundrums force us to rethink “what’s respectful, beneficial, and just” about our research… and that’s a VERY good thing

Thanks CAREB!

If you’d like these slides:@maryLgray

mLg@microsoft.com www.maryLgray.org

www.socialmediacollective.org