The Questions I ask Before Signing an Informed Consent Form

A list of concrete questions you may want answered before joining a research study

As someone who has written consent forms, these questions incorporate my experience on both sides of the participant-researcher relationship. Some of these are clear in the consent form. I suggest ways to find this info (e.g. searching keywords) in the sub-bullets below.

For any lingering questions, you should ask the research team these questions. I sometimes refer to this as my "test" for the research team, in which I evaluate their response time and the quality of their answers. There is no single right answer to these questions. However, transparent and direct answers are key to scoping out authentic research teams with your best interests in mind.

The Complete List

1. Can I see the consent form before the onboarding call?

2. Will you return my data? In what form? I’m willing to accept raw data files. 

   1. (Ctrl F + “report”; note: cohort report vs individual report)

3. Will you let me know about any incidental findings you come across in my data? 

   1. E.g. you find a genomic marker for active cancer, which could prompt medical action, but was never intended for this study

4. What kinds of transactions could my data be part of? 

   1. E.g. collaborations with other universities, sold to companies

5. If you share my data, how can I be notified of that?/what sort of transparency can you offer there, so I can have an idea about who has access to my data.

6. Who is sponsoring this study?/What are the funding sources?

Broken down my Category

Your results	$
Will you return my data? In what form? I’m willing to accept raw data files.  (Ctrl F + “report”; note: cohort report vs individual report) Will you let me know about any incidental findings you come across in my data?  E.g. you find a genomic marker for active cancer, which could prompt medical action, but was never intended for this study	4. What kinds of transactions could my data be part of?  E.g. collaborations with other universities, sold to companies 5. If you share my data, how can I be notified of that?/what sort of transparency can you offer there, so I can have an idea about who has access to my data. 6. Who is sponsoring this study?/What are the funding sources?

It's normally made clear upfront the time commitment and financial compensation. However, if you're unsure, just ask!

Other areas of interest

You may want to learn more about the research team, specifically the "principal investigator" (PI), which is the scientist leading the project. That info is usually listed at the beginning or end of the consent form.

Keep an eye out for the "Conflicts of Interest" section, as well!