What should I know before agreeing to participate in a research study?
The researcher should give you a fairly detailed description of the study before you agree to participate. If researchers are affiliated with a university, they typically will ask you to sign an Institute Review Board approved consent form acknowledging potential risks and benefits of participating in their study. You will also be given a copy of the consent form you signed, so you can refer to it if you have any questions or if you would like to contact the researcher or their university’s IRB to make a complaint. Throughout your participation in a research project, feel free to ask the researcher to clarify any words, phrases, or concepts that are not immediately clear to you. Academic language can often be confusing (even for researchers!), so please let researchers know if they are not being clear.
Are researchers going to use what I post on social media, discussion threads, or emails with Icaristas as a part of their study without my consent?
No, no information will be used without your consent. We are very concerned about surveillance issues, and we do not want researchers to do anything that would make our forums or social media spaces feel like an unsafe space to share your thoughts and feelings (or a laboratory!). We will work with researchers to ensure that they ask permission from research participants before they collect any quotes or personal information posted online. We are also exploring the possibility of creating spaces on our forums that are explicitly dedicated to participants interested in working with researchers and sharing information with them.
Ultimately, respecting privacy vs. getting the word out about our group (for academic, medical, judicial, and general audiences) is a really tricky line to tow. We want to start a conversation about our relationships/policies towards researchers and get your input on how we can balance supporting important research projects (which, in turn, supports our movement) and how we can maintain a safe, confidential space for all Icaristas.
What if I don’t want to be in a study?
Don’t worry! Your participation has no effect on your interactions with fellow members of your local Icarus chapter or with fellow contributors to our online forums and social media spaces. If you would like, please share your concerns and reasons for not participating with the researcher. Your input could help them structure studies differently in the future and make their work more approachable and conducive to future participation.
What are my rights as a research participant?
Your participation in research is completely voluntary. There are no negative repercussions for not participating in research, and you have the right to withdraw from a study at any time. You can contact Icarus staff, the researcher, and their university if you feel like there has been a breach in agreement concerning how the research has been conducted. You can decline to participate in certain aspects of the research project and only engage with what you feel comfortable doing. You can also ask the researcher to anonymize your information, so that your name will not be associated with any personal information gathered and/or direct quotes. Our advice is to get to know the researcher well, learn about the purpose and design of the research project, and know your limits for what you feel comfortable sharing. Researchers do not want to be additional stressors in your life, and they hope work with you in whatever capacity that you want to engage with them.
What is my relationship to researchers?
This is a difficult question to answer because the personalities/preferences of researchers and participants, research designs, timeframe/scale, etc. vary greatly from project to project. You may end up considering some researchers who spend a significant amount of time with your community to be good friends, while researchers who survey a large number of groups may not be able to form as close a relationship with you.
Many social researchers will say that there are no strict ethical guidelines defining the relationship between researcher and participants. Still, generally, it is considered best practice not to form any romantic relationship with research participants. These relationships can make it more difficult for both researchers and participants to focus on the project at hand and even further complicate the power dynamics between them.
What if I agree to participate in a study, but then–after a few weeks–I decide that I no longer want my information to be used in the research project?
This really depends on the specific research project and the researcher’s protocol, but usually the researcher will respect your request to withdraw any and all information gathered as a part of the study. Refer to your consent form on researchers’ policies towards withdrawing from their study and contact the researcher as soon as possible when you have decided to take this path. Members of the Icarus staff are also willing to advocate on your behalf, and we will help you communicate with the researcher as you see fit.
This being said, the history of psychiatric research (and social science as a whole) is fraught with many cases of unethical behavior on the part of researchers. We are very aware of this painful history, and we do our best to discourage potential research projects that are not well-aligned with our mission and vision.
If I am interested in doing my own research, but I’m not formally trained in research or affiliated with a university, how should I begin?
We are so excited that you are interested in conducting research, whether it is about the Icarus Project specifically or beyond in your community! If you would like to raise awareness about a local issue, you could conduct a formal or informal study–including interviews with folks about police action, experiences at a community mental health center, access to health care and other resources, etc.
If a local group wants to explore the impact of an activity, consider looking into some evaluation tools–either qualitative (interviews, informal conversations, etc.) or quantitative (surveys, mapping projects, computing)–to use to do that work. This may help your group improve practices and seek funding for further research in the future.
Partnerships with academics are helpful, but not required. For more information about how to get started, download this paper by the Lived Experience Research Network.