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