In advance of the State of the Union, President Obama appeared at the Federal Trade Commission today to preview a couple of administration proposals, which will be addressed in the upcoming speech to the nation. The President addressed a potential federal breach notification statute:
…we’re introducing new legislation to create a single, strong national standard so Americans know when their information has been stolen or misused. Right now, almost every state has a different law on this, and it’s confusing for consumers and it’s confusing for companies — and it’s costly, too, to have to comply to this patchwork of laws. Sometimes, folks don’t even find out their credit card information has been stolen until they see charges on their bill, and then it’s too late. So under the new standard that we’re proposing, companies would have to notify consumers of a breach within 30 days. In addition, we’re proposing to close loopholes in the law so we can go after more criminals who steal and sell the identities of Americans —- even when they do it overseas.
So, the proposal is to standardize breach notification to 30 days (Personal Data Notification & Protection Act; Florida is 30 days; some states say as soon as practicable).
Some express the concern (which is typically voiced by state Attorneys General) that a federal statute would dilute the effectiveness of the consumer protections in place. http://www.washingtonpost.com/blogs/the-switch/wp/2015/01/12/privacy-advocates-a-national-data-breach-notification-standard-might-actually-make-things-worse/
The political pundits comment that it is not clear whether such legislation would make it through Congress. This is due to certain industry resistance to tackling a new federal statute having absorbed the various state rules; and then there are consumer groups, who worry about preemption on the issue. See comments at:
Another new proposal is the Student Digital Privacy Act. This legislation would require that data gathered about students through educational programs can be used only in an educational context, not sold to third parties (similar to the recent California law).
The Administration is also going to revive its 2012 Consumer Privacy Bill of Rights, which lays out principles for online data collection (revised proposal to come out in 45 days).
The President also took up the challenge of “precision medicine:”
I want the country that eliminated polio and mapped the human genome to lead a new era of medicine — one that delivers the right treatment at the right time. In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable. Tonight, I’m launching a new Precision Medicine Initiative to bring us closer to curing diseases like cancer and diabetes — and to give all of us access to the personalized information we need to keep ourselves and our families healthier.
This is part of the movement toward tailored therapies and treatments for diseases and chronic conditions. The example referenced in administration materials was that of a cystic fibrosis patient, given the medicine Kalydeco (developed by a company called Vertex). Reportedly this is the first drug designed to counter the genetic cause of the life-threatening chronic lung disease. The medicine targets the underlying cause of the disease for a small subset of patients.
Providing such targeted treatments likewise requires collection of more personalized medical information from patients. Costs of collecting data and personalizing treatment is noted in reaction to such initiatives but its promoters also hope that “[m]ore research will allow clinicians to make more-precise diagnoses, which in turn drive better treatments.” http://www.modernhealthcare.com/
See also, The Patient-And Her Data-Will See You Now,
“Personalized medicine has the potential to transform our health care system, which consumes almost $3 trillion a year, 80 percent of it for preventable diseases,” Dr. Snyderman said.
Although the new tests and treatments are often expensive, he added, personalized medicine can save money while producing better results. “It focuses therapy on individuals in whom it will work,” he said. “You can avoid wasting money on people who won’t respond or will have an adverse reaction.”