hackforla / hackforla/internship

TWE: Research Ethics Guide: How to Identify and Accommodate Study Participants'/Study Population's Needs

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#735 0 comments 0 reactions 1 assignee Assigned to @erin-ryan-93 View on GitHub
complexity: medium feature: ethics guides feature: research Participant Type: All PBV: research question ready for research lead role: UI/UX research size: 2pt
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Description

# Instructions for creating this issue
The person who creates this issue should use these links to add links to the resources section and customize this issue
- [ ] Find WIKI page for this issue by looking at role pages [Internship Wiki, Join the team page](https://github.com/hackforla/internship/wiki/Joining-the-Team) - then add the appropriate link to the resources section
- [ ] Find document template that should be used [Templates & Product Branding](https://github.com/hackforla/internship/wiki/Design-Process-Overview) - then add that specific template link into the resources section
- [ ] If no dependencies, delete dependency section
- [ ] delete this section when all the checkboxes above are complete (i.e., the issue assignee will never see this part)

### Dependencies
ANY ISSUE NUMBERS THAT ARE BLOCKERS OR OTHER REASONS WHY THIS WOULD LIVE IN THE ICEBOX

### Overview
We need to be able to identify any accommodations research participants may need to be able to fully participate in the study, as appropriate. EG: If you are specifically researching a population where there are significant numbers of non-English speaking participants, then part of your preparations for data collection need to include making sure you will have interpreters there to assist participants. This will tie in hand-in-hand with developing consent forms, where research participant inclusion and exclusion criteria will need to be identified. It is important that any exclusions are related to the parameters of the study, in order to avoid discrimination. This will vary from experiment to experiment. EG: In contrast to the previous example, if you are conducting a remote survey study, and the surveys are all in English, then not being fluent in English will be an exclusion criterion, because it is directly essential for participation, and not something that can be reasonably accommodated under these circumstances. However, making sure the surveys are formatted so that people who are vision-impaired and need to use screen-readers can participate is a reasonable accommodation, and should be done to ensure that everyone who is eligible to participate, and wants to, can. Contrastingly, if you are studying people who participated in a certain activity to understand their experiences, then not having participated in the activity is an exclusion criterion, since that is outside the scope of the study parameters.

This is also important for making sure you collect good data. As in our previous example, if you are studying a population where a significant proportion of that population does not speak English, and you only collect data from English speakers, then your data is highly biased, and will not accurately reflect the experiences of the population you are studying. In such cases, accommodations such as interpreters are essential. Good scientific practice GENERALLY involves collecting data from as diverse of a population as possible within the parameters of the study, to ensure that the results are actually representative of reality, and generalizable to anyone within your target population, not only a specific subset. (Obviously, there are exceptions to every rule, so use good judgement, but this is a good general principle of experimental design.)

### Action Items
- [ ] Update relevant WIKI page (See resources)
- [ ] Read through the `HfLA Template on Making a Guide`(Resources # 1.01)
- [ ] There is also a video illustrating how to make a guide (Resources # 1.02)
- [ ] Start formatting and drafting the guide on how to store data
- [ ] Save it to Internship > Internships > Research > Guides and How-Tos > Ethics Guide
- [ ] Copy the URL of the guide you just created
- [ ] In Resources # 2.01, add parentheses `()` at the end of the line with no space in between the right bracket `]`
- [ ] Place the link you just copied between the parentheses so it turns into a hyperlink
- [ ] Choose "Update comment" in Github and make sure all the checkboxes above have been checked Screenshot 2023-02-21 at 6 47 15 PM
- [ ] Review with project leads (this might take multiple rounds)
- [ ] Update the content based on feedback (this might take multiple rounds)
- [ ] Save the approved draft to the `UI/UX Guides` folder for distribution [Resources # 1.03]
- [ ] Copy the URL of the guide that has been approved in the `UI/UX Guides` folder
- [ ] In Resources # 2.02, add parentheses `()` at the end of the line with no space in between the right bracket `]`
- [ ] Place the link you just copied between the parentheses so it turns into a hyperlink
- [ ] Choose "Update comment" in Github and make sure all the checkboxes above have been checked Screenshot 2023-02-21 at 6 47 15 PM

### Resources/Instructions
#### Resources needed for completing the issue
1.01 [HfLA Template on Making a Guide](https://docs.google.com/document/d/1kV29V-mRPBNRRfIbYHrz05FElC02Dh6egaMANlxaZrM/edit#heading=h.c8tc614ce3iu)
1.02 [How to write a guide video](https://drive.google.com/drive/folders/1udevGv9z8PSb5c7gsBBqKouT7X7gj-12?usp=share_link)
1.03 [UI/UX Guides](https://drive.google.com/drive/folders/1gC-EC8NST7f4-jk163yi9MifgwlQN22z?usp=share_link)

#### Resources gathered during the completion of the issue

Contributor guide

Open the contributing guide

Assessment

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