About returning genomic results obtained in research that have significant clinical implications, has anyone done this through a ResearchKit app yet? I welcome any suggestions or ideas for what people are thinking about regarding informed consent and deciding about what results might be offered.
The first step to determining whether to return a genetic result is finding out whether the participant wants to receive it! This means that your app needs a way to elicit participants’ preferences about which results they want to receive. Right now there is no consensus on how best to do this, which opens up many opportunities for innovative approaches.
If you are looking for ideas about how to elicit preferences about receiving genetic results, have a look at https://www.my46.org. This tool was designed by researchers at the University of Washington, and is pretty comprehensive.
My research team has designed a more streamlined tool we call PIGSR – Preferences Instrument for Genomic Secondary Results. It has just 14 questions, and would be suitable for use in a ResearchKit-based app. We are making it available under a Creative Commons Attribution-ShareAlike 4.0 International license, and would love for app developers to adapt it for their own purposes. It’s not quite ready for distribution, however, so I’ll edit this post once it is up – probably within 2 or 3 weeks. If you need it before then, please feel free to PM me.
It also depends on the state in which you are located. State laws differ as it relates to the return of results from genetic testing. It also will matter what the result is and what test was done. Returning the results for something like Huntingtons via a mobile device would be very different than returning the results for something else. Genetic counselors should be involved in the conversation.
