July 15, 2015 -- University of Houston Law Center Professor Barbara Evans was in Port Aransas on a recent Saturday, downcast at the prospect of an unsuccessful day of surfing—no waves!—when her smartphone pinged an invitation to the White House. “That cheered me right up.” she says. “I had been watching the White House’s Precision Medicine Initiative with a lot of excitement since the president announced it in January of this year.
“Precision Medicine is what we used to call pharmacogenomics,” Evans adds. “It’s the idea that if you want to cure people’s illnesses and keep them from getting sick in the first place, you need to get very specific about which gene variants each person has and know which medicines and preventive strategies will work for people with that particular genetic make-up. The same treatments don’t work for every person. That’s the inconvenient fact that the 20th century healthcare system never dealt with. Precision medicine is the idea that healthcare needs to become radically individualized—average statistics about safety and effectiveness may say nothing about what is good for you.”
In the world of precision medicine, doctors lose their godlike status and you realize that you yourself may be the better person to coordinate your own healthcare, Evans explains. “We’ve all had the experience: You go to the doctor, and the doctor is spouting advice about what is good for the average person. Some of it is good advice (e.g., exercise more). But a lot of it is worthless, because you are not the average person.”
To manage your health, you need open access to your own health data, and that, she says, “is the thing our paternalistic healthcare system has not been willing to allow.” In the past couple of years, Evans wrote a stream of research articles arguing that individuals should have broader access to their own health data, based on First Amendment arguments, intentional tort theory, statutory nuances, and regulations. This body of work inadvertently put her at the center of precision medicine movement.
“Nine-tenths of the battle in precision medicine is to reconsider legal barriers and paternalistic ethical norms that block people’s access to information about their own health,” Evans notes. “People are not as impulsive, irresponsible, foolish, and fragile as healthcare experts presume we are. We all care intensely about our health, and we won’t go all to pieces if we receive a bit of bad news. Just give us access to our own health data, and we will figure it out and cope with it or hire medical service providers who can help us do so.”
Evans participated in a brainstorming session with members of the president’s Precision Medicine Team at Harvard Medical School on June 25, which led to an invitation to the Precision Medicine Champions of Change event at the White House last week.
The event honored a small group of plucky patients, next-of-kin, and innovators who are fighting back against today’s imprecise, impersonal healthcare system. Honorees included patients like Emily Kramer-Golinkoff, a vibrant 30-year-old who is using social media to organize communities among people with Cystic Fibrosis—a rare disease that is now known to include more than 1,900 even rarer genetically distinct subgroups. Some of these subgroups are so rare that patients are unsure whether the scientific/pharmaceutical industrial complex will help them and are busily raising funds, hiring scientists, and taking matters into their own hands. Another honoree was Hugo Campos, a self-professed “data liberation advocate,” who has an implantable cardiac device that constantly beams information about his heart to the device manufacturer and to his doctor, while he himself is denied access to the stream of data that is emanating from his own chest.
“The precision medicine movement is thrilling,” Evans says. “Twentieth-century healthcare was an improvement over nineteenth-century healthcare, but that’s about all one can say about it. The 21st -century healthcare industry is in a period of profound, technology-driven restructuring sparked by game-changing advances in genomics and information technology. There’s so much work to do… a lot of it is legal work. And it’s all good work.”