“We just don’t know.” It’s not exactly what most people want to hear from medicine’s top minds. We want our healers to be certain. And with rapid improvements in genetic research, Big Data, diagnostic imaging, and personalized, predictive medicine, there’s more information than ever about what makes us tick.
“We’ve made stunning progress,” Dr. Elizabeth Nabel, former director of the US National Heart, Lung and Blood Institute, told participants at #TEDMED2014 yesterday. “But the simple truth is what we have is not knowledge; it’s information that is going to morph and shift into something else next week, next year or in 50 years.”
The more we know, the more we should realize the limits of what we know, she said. “We are desperately in the dark about how most things work. Humility is the secret ingredient that unveils truth and brings about change.”
It will also help us roll with the punches as rapid change becomes the norm, said TEDMED Chairman and Curator, Jay Walker.
“Today, we can’t see a cancerous tumour until it’s been growing inside us for six years,” he explained. “Soon we’ll be able to detect them in six days, and see dozens of micro-tumours in each of us. We’ll have to change how we see disease and how we respond to it.”
And with scientists and biohackers “getting their hands on the software that controls every form of life on earth,” Walker argued we’re on track for changes that biological evolution “could never do or prepare us to deal with.”
According to biomedical ethicist Amy McGuire, thriving in that brave new world may mean rethinking the notion that more information is always better. She challenged TEDMED participants: “If you could take a test to find out your chances of developing cancer or Alzheimer’s disease, a disease that you can’t do anything about, would you take that test?”
With advances in genomic sequencing and our understanding of the genetic causes of disease, it’s no longer a hypothetical question. “Many envision a world where we’ll all be sequenced, potentially at birth, and all have access to predictive information that suggests disease we might get and how we might die,” said McGuire.
For some, that information is empowering. “For example, as Angelina Jolie discovered, having the BRCA gene mutation can increase your risk of breast or ovarian cancer, and many people with that mutation may decide to have their breasts removed,” explained McGuire. “But one person’s transparency may be too much information for another.”
Indeed, there may be cases in which it isn’t “wise, compassionate or appropriate to burden ourselves with every possible scrap of predictive information, especially if we treat our genome as … infallible prophecy.”
“Our genome sequence is not a crystal ball,” but knowing that in your head and in your heart are two different things, said McGuire. As such, not knowing may be best.
CMAJ is a TEDMED affiliate and our editors will be blogging about TEDMED 2014 this week.