Below comment in response to the New York Times article “You for Sale, A Data Giant is Mapping, and Sharing, the Consumer Genome.”
Acxiom is the poster-child for why tough new laws are needed to protect personal information on the Internet, in electronic systems, and on cell phones ASAP. No data should be collected about Americans without prior meaningful, informed consent.
Natasha Singer’s story is a must read to understand how the use of personal data threaten people’s jobs, reputations, and future opportunities. The information is analyzed and sold to those who want detailed real-time profiles of who we are, including the health of our minds and bodies. Data analytics enable Acxiom to create and sell far more intimate, detailed personality and behavioral portraits than our own mothers or analysts might know about us (and would never share).
Most people have never heard of Acxiom or other hidden data users. Today, most Americans have no idea that personal data is used by thousands of corporations and government agencies to make decisions about whether they will receive jobs or benefits.
Even though the hidden data mining industry began by using personal information to improve marketing and advertising, Acxiom proves that the kind and amounts amount of identifiable data being collected are simply unacceptable. As for the collection of health information, the data mining industry is clearly violating Americans’ very strong legal, Constitutional, and ethical rights to control and keep personal health data private. To the public, this is theft of personal health information.
On June 6th at the 2nd International Summit on the Future of Health Privacy, Professor Latanya Sweeney of the Harvard Data Privacy Lab along with Patient Privacy Rights introduced theDataMap.org. This project will enable citizens and whistleblowers to help create a detailed picture/map of where sensitive personal health information flows, from prescription records, to DNA, to diagnoses. Without a ‘chain of custody’ for our identifiable health data, it’s impossible to know who uses our data or why. A ‘chain of custody’ for personal health data could show us whether potential employers or banks had bought or received our health data, learn about the many ways the federal government uses health data as described in the Federal Health Information Technology Strategic Plans, and see the names of for-profit and public research and public health institutions that use personal health data.
Health data has long been used to discriminate against people for jobs, insurance, and credit. This fact is so well known that every year tens of millions of us refuse to get early diagnoses and treatment for cancer, depression, and sexually transmitted diseases. Hidden data flow causes bad health outcomes; treatment delays can be deadly. We need the same kind of control/consent over the use of electronic health data that we have always had for paper medical records.
US Internet and electronic systems have made us the most intimately surveilled people in the Free World. In Europe, strong laws and privacy-enhancing technologies prevent hidden data collection and data flow, so everyone benefits from technology and harms are avoided.
European standards for the collection of personal data were created after WW II, when data were used to decide who would die. Europeans consequently passed the world’s toughest data privacy laws, preventing personal data from being collected or used without consent.
Europe also established regional Data Privacy Commissioners to defend citizens’ rights to control the collection and use of personal information and ensure data accuracy. The US needs them too.
Unless we know where trillions of bytes of our personal data flow, who uses it and why, we cannot weigh the benefits and risks of using the Internet, electronic systems, or cell phones. It’s time for Congress to end the massive hidden flows of personal data.