Tuskegee, Belmont And Me - Ethics And Accessible UX
Speaker: David Sloan
Twitter: @sloandr
Slides
General Notes
  - Accessibility professionals know that there’s value in building on a11y standards conformance by working with people with disabilities
 
  - If we focus on peak curve in a Bell Graph, we only
 
  - Design for stress cases
 
  - Design for diverse situations
 
  - Inspiration book: Interaction Design by Sarah Rogers
 
  - Involve people with disabilities in UX research
    
      - Validate our assumptions
 
      - Test our claims
 
    
   
  - Generative research: help us explore and discover more about a problem space to define a design problem
 
  - Evaluative research:
 
  - There are many resources: blogs, articles, encouraging to include people with disabilities and diversity in your studies
 
  - Are we doing enough user research with people with disabilities?
 
  - It is difficult to share findings of studies done with people with disabilities
 
  - Unethical research studies:
    
      - Tuskegee Syphilis Study (1932-1972): exploited and violated human rights of those involved
 
      - Nazi’s studies during WWII
 
    
   
  - The Belmont Report: Ethical Principles and guidelines for protection of human subjects of research
 
  - Belmont Report - Principle 1: Respect for persons: Treat people as autonomous agents.
 
  - Recorded videos during User Research are valuable to stakeholders and developers alike. Make sure to get permission to use/share.
 
  - Principle 2 - Beneficence:
    
      - protect people from harm
 
      - maximize possible benefits & minimize possible harms
 
    
   
  - Think carefully how long do you want participants to interact with a product. Give them breaks/pauses.
 
  - Your participant wellbeing is more important than your desire to obtain data from user research
 
  - If you don’t spend time enough on recruitment process you might get bias results
 
  - Seek diversity beyond accessibility needs you’re seeking to research
 
  - Challenge your assumptions & Test your claims
 
Resources
  - David Sloan: Here’s one good guide to involving people with disabilities in UX activities: http://www.uiaccess.com/accessucd/involve.html
 
  - Kate (Canada Post) We use http://www.makeitfable.com to access a community of testers with disabilities to uncover usability issues
 
  - Maria Acevedo: https://www.cdc.gov/tuskegee/timeline.htm
 
  - David Sloan
https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html
 
  - Kate (Canada Post)
There’s a free 3-hour course on research ethics online in Canada: https://tcps2core.ca/welcome
 
  - Beatriz (Accenture):  Respect for persons in accessible UX research:
    
      - accessible informed consent process
 
      - avoid unnecessary deception
 
      - don’t place undue demands on PwD to participate
 
      - avoid undue intrusions of privacy
 
      - also: hire regular participants as expert consultants
 
    
   
  - Beatriz Gonzalez (she/her)
this looks like a great course on the topic too. https://www.futurelearn.com/courses/research-ethics-an-introduction/11