You learned a lot in Research Ethics for All!
To review everything you learned:
Review the main ideas in your workbook
Review and discuss the Research Participant Rights Handout. You can keep this handout with you when you do research to remind you of the main rights research participants have.
Your team can also choose to do add-on activities to keep learning and thinking about your next steps as a researcher.
Review the main ideas. Be sure to ask any questions you have about the main ideas.
Scientific research is asking a question and using a step-by-step process to collect information to answer the question.
In community-engaged research, community research partners share their experiences and knowledge to help make research questions that matter to people with disabilities, and do research that is accessible and respectful.
Research ethics are about making sure people are treated well and that their rights are respected when they are in research.
Research ethics can help make sure bad things don’t happen when people are in research.
Institutional Review Boards (IRB) are groups of people who make sure researchers protect people’s rights and well-being.
Eligibility criteria are the characteristics and experiences that people need to be in a research study.
Only people who have all the characteristics on the list can be in the research study. This list is different for every study.
Consent must be:
Informed: people have all the information they need about the study.
Voluntary: people making their own choice without anyone pressuring them.
Ongoing: people can say no at any time during the study.
We often get assent from people when they have a legally authorized representative (LAR). Assent is when someone with a LAR says or shows with their body that they want to be in the research study.
We work together with our team to have safeguards. Safeguards are the things we do or use to keep people safe in research.
Keeping information private and confidential is really important in research.
We keep information private and confidential before, during, and after the research study.
Mandatory reporting means if researchers learn that a research participant is being hurt or abused, they have to share the information with authorities (people who can stop other people from being hurt). Researchers also have to share information if they find out a research participant is hurting or abusing someone else.
Your safety as a community researcher is important.
Your team can plan for what you will do if a community research partner is hurt doing research.
Authors are the people who share about a research study.
If you are part of a research team, you may have the right to be an author.
It is important to reflect, or think about what you do as a researcher. If we think together about what we do we can help keep participants safe and respect their rights.
Your team can choose to do add-on activities related to authorship and sharing findings.
Congratulations!
If you learned on your own, congratulations on completing Research Ethics for All! If you learned with a team, go to Certification to complete Research Ethics for All.