In the late 1800s, Cuban physician Carlos Finlay had a theory that yellow fever was spread by mosquitos — rather than by dirty clothing, as was the belief of the day. To test his theory, he asked living, breathing human beings to be voluntarily infected with the disease. It was devastating, potentially fatal work. And yet people signed on to be a part of the research. It’s believed to be one of the first times that subjects in medical experiments were given “informed consent,” a document laying out the risks in order to give test subjects the full picture of what they were getting themselves into.
“Informed consent is an idea we should be very proud of as a society — it’s something that separates us from the Nazis at Nuremberg,” says John Wilbanks in this powerful talk from TEDGlobal. “It’s the idea that agreement to join a study without understanding isn’t agreement.”
Rules about informed consent were codified starting after World War II, says Wilbanks, and strict limits were placed on how data could be gathered and used. Under current rules and laws, a situation such as that described in The Immortal Life of Henrietta Lacks would not take place, nor could the notorious Guatemala experiments of the 1940s.
But that said: A lot has changed since the late 1940s. Medical research is no longer limited to experiments that take a small group of individuals and test how a specific pharmaceutical affects them. Today, we recognize that our genomes, environments and choices all play into the overall health equation. And Wilbanks worries that, in this age where data on all these factors could be made widely available, our laws about medical privacy are delaying new treatments.
As Wilbanks says, “The way we gain informed consent — this tool that was created to protect us from harm — now creates silos. The data we collect for prostate cancer or Alzheimer’s trials goes into silos where it can only be used for prostate cancer or Alzheimer’s. It can’t be networked, it can’t be integrated … We cannot take the information from past trials and put them together to form statistically significant samples.”
Wilbanks imagines a different reality for our data — a commons that pools our medical records, genotypes and environmental factors. He is working to build a mine-able database through the website WeConsent.us, which allows anyone over the age of 14 to contribute their medical information and make it available to researchers. The idea: to allow them to see patterns that might not be visible with smaller sample sizes.
“I live in a web world where, when you share things, beautiful things happen,” says Wilbanks. “At least some of us really like to share as a form of control.”
To hear more about why forming a medical commons is so important, listen to Wilbank’s wonderful talk. And if you’re wondering how you can contribute to this project, read below for Wilbank’s suggestions.
Here, Wilbanks’ five suggestions for those who want to be impatient patients:
1. Learn about your data. You can get data about yourself amazingly easily now: your genotype, your electronic medical record, your lab results, your prescription information, your activity levels. Engage your doctor in a conversation about your data. Who’s gathering it? Where does it go? Why does it move the way it moves? Can you get a copy of it? Can you get a copy that is computationally useful — in other words, not a fax? In many cases, people have a legal right to copies of their medical records and other health information. So don’t be afraid to ask for it.
2. Generate your own data. If you’re really interested or motivated, it’s increasingly possible to commission your own data directly from your own samples. Companies like 23andMe.com will help you with your genotyping, and companies like Science Exchange can help you find providers who run more complex analysis.
3. Change your role from passive to active. Being “patient” is all about waiting — waiting for your doctor to see you, waiting for your pharmacist to fill a bottle. But you can be impatient. If you have cancer, you can get on the Association of Cancer Online Resources mailing list, or get in touch with Cancer Commons. You can enroll in a clinical study like the Athena Breast Health Network, or sign up with a patient-centric research organization like the Dr. Susan Love Research Foundation Army of Women, or get seriously deep into your genome at the Personal Genome Project.
4. Learn about the reality of identity and data. Be skeptical of promises of strong anonymity that also promise strong research. We can remove identifiers from your data, but as more and more data about you go online, it’s more and more possible to reverse-engineer and rediscover your identity. And one of the things that works best to create really anonymous data — introducing noise into the data, or false data — actively undercuts the scientific utility of the data. So if you’re going to get into this, understand that there are risks, and that many of those risks are poorly understood. This is a brave new world we’re entering.
5. Become a data donor. Go through the Portable Legal Consent process and donate your data to research. Because it’s only if we can create a large enough pool of impatient citizens, who understand the individual risks and still want to share their data, that we will accelerate the rate at which new technologies actually improve our health.
To hear more from Wilbanks, read his blog at Del-fi.org. He will be posting attribution for his TEDTalk slides there, as well as sharing a little bit about the experience of speaking at TED.