Jennifer King, The Washington Post,; Opinion: After a rape survivor’s arrest, it’s time to rethink genetic databases
"Jennifer King is a privacy and data policy fellow at the Stanford Institute for Human-Centered Artificial Intelligence...
This episode offers a glimpse of the concerns over privacy — as well as matters such as consent to data collection — that will arise as genetic information is stored in ever-greater amounts, and as governments take an ever-greater interest in exploiting it."
"Some say thousands of Sardinian research subjects never agreed that their samples could be sold or used by a for-profit company when they signed a medical consent agreement at the time the database was accumulating samples... The conflict has raised the kind of thorny ethical questions that are likely to become more pervasive as scientists tap into the promise of massive DNA databases to learn more about disease. Should a private company be able to profit from the study of a population’s DNA, when the DNA was voluntarily donated? The deal also raises uncomfortable questions for local critics: why did Shardna go bust to begin with?... The question now is whether participants like Maria Tegas or her children will ever gain from the research that has put her corner of Sardinia on the map. When Cerrone was asked whether he believed Sardinians ought to benefit in the future from any potentially lucrative medical advancements that might emerge, the executive demurs. Tiziana has already “given back” to the community when it bought the database for €258,000, including all the outstanding debts."
