Is There an Obligation to Return Genetic Data to Research Participants?
Kaiser Responds to 23andMe’s TEDMED Criticism” mohan says: November 4, 2009 at 1:02 am Why doesn’t the RPGEH restructure so that it can return results to individuals? Because genetic information obtained through today’s genome-wide studies has not been designed to be useful to individuals; it is designed for use in research. In most cases, it isn’t known whether the variants tested for are actually implicated in a disease process, or are markers for variants that play a role in disease, and results from these tests are rarely actionable. Bob says: November 5, 2009 at 2:18 pm I agree that consumers should obtain personal genetic data even if they are not clinically useful. My concern is with the accuracy of the data. If a private company tells me, based upon current information, that my risk for type 2 diabetes is 10% but when additional variants that influence risk become known, and it turns out that my risk is actually 30% or 1%, how valid is the 10% value I get today? If future varia
Related Questions
- As part of their course my students will be collecting data and/or samples from human participants - but not for research purposes. Does this need ethical approval?
- My research takes place in a developing country. How do I explain data archiving and secondary use of data to participants?
- How do I combine data for different research participants?
