At the Health Affairs blog, Duke University researcher Robert Cook-Deegan and Genetic Alliance CEO Sharon Terry say that in a time when sequencing is becoming cheaper and faster, and genomic information is becoming ubiquitous, it's important to remember that an individual's genome belongs only to that individual. Many people may have their genomes sequenced over the next few years for a variety of reasons, and scientists will need access to all that data to learn about disease risk, inheritance, and genetic lineages, Cook-Deegan and Terry write. But before all that happens, they add, a framework needs to be put in place to protect privacy and keep the decision about whether to participate in research in the hands of the individuals, not researchers or companies.
"Your genome should belong to you, but it doesn't always. Right now, for all intents and purposes, it belongs to the service or research institution that produces your sequence data," Cook-Deegan and Terry write. "They may store your genomic information, and interpret it for you, but they have no obligation to provide you with the raw data in a form you can share with others. That will change only if we collectively insist on it, and if we make sure that genome sequencing services adhere to standards and formats that will make our right to our genomic data meaningful."