Opinion: All study participants have a right to know their own results. My lab has been doing that for years
For less than $100 and a sample of spit, you can learn about your genes, your disease susceptibility, and your ethnic heritage. Wearable sensors report on your sleep patterns, your heart rate, and what air pollutants are nearby. With Detox Me Action Kit, a crowdsourced project my team recently launched, you can find out what common hormone-disrupting chemicals are in your body, including ingredients that manufacturers don’t have to disclose. Then there’s all the data in your medical record that you can now get hold of, thanks to changes in health laws.
Between the rise in direct-to-consumer products and more transparent medical care, people today have access to myriad types of data about their personal health — and they’ve come to expect it. Yet for participants in most research studies, outdated ethical standards prevent them from learning anything at all about what was found in their blood, urine, or any other tissue they donated for research.
Thousands of Americans take part in studies and clinical trials every year to support work ranging from basic laboratory science to long-term epidemiological studies
