Lauren Vogel is a news editor at CMAJ
“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.
Jamilatu Yidana Gubbels
Lauren, your article posed a few questions in my mind. Would I have been better off knowing that I am susceptible to having fibromas in my uterus based on my genome make up? Would it have been empowering to have the ability to plan to a “T” the removal of my fibromas in a timely fashion as I would plan my wisdom teeth extraction?
As I pondered these two questions, I can not help but admit I love the feeling of being in control. There is a sense of security, comfort and reassurance that come with knowing exactly what to expect. And I do thrive on that.
I found out at 12 weeks of pregnancy that I have 2 big fibromas in my uterus. For how long have they been there for? I do not know. I had zero warning signs until my pregnancy at age 36.
The two intruding fibromas of my baby’s space of growth, however, taught me valuable life lessons. I learned to be flexible adapting to the circumstannces. I also learned to communicate better with my spouse and my friends. It made me vulnerable and forced me to allow others to help me. At 30 weeks pregnant, I feel at peace and secure that everything will be okay as I embrace the unknown.
Life is full of unpredictable and uncontrollable curve balls. These intrusions allow us to pause, listen, adjust, and learn. Not an easy exercise to maintain in this world we live in. There are more uncertainties then definite reliable answers. However when we choose to actively pause, listen, adjust and learn, it makes us better persons.
(Lauren Vogel) Thanks for your comment, Jamilatu! For many people, the line between whether predictive information is empowering or overwhelming comes down to whether that information suggests concrete next steps. I would probably feel empowered knowing my predisposition for a disease for which there are clear prevention, screening and treatment measures. But in the absence of those measures… I’d probably be hesitant to open a Pandora’s Box of worry without a trade off in control. People are notoriously bad at predicting how they’ll react to such information, and worse at changing unhealthy habits based on “risk” alone. I hope I will respond to life’s curveballs as you have done – with courage, communication, vulnerability and peace. Wishing you joy and a safe delivery. LV
Jamilatu Yidana Gubbels
How kind of you, Lauren…thank you!
Food for thought:
I would like to add that the organisation of health services of a country i.e. it’s accessibility, coverage, efficiency, effectiveness, acceptibility inevitably empowers and improves the health status of its citizens.
Imagine a healthcare infrastructure that responds to 80% of its citizens healthcare needs at the primary level of care…eradicating preventable diseases…through health promotion, prevention, screening, and treatment…hence reducing the overwhelming economic burden of secondary and tertiary levels of care…increasing immeasurably as a result the quality of life of its citizens.
It’s very shameful that I lived in the Ottawa area for 15 years, from the age of 20 and did not have a family doctor. As an avid marathon runner and athlete, I felt empowered knowing my predisposition to specific diseases so I took matters into my own hands by living a healthy lifestyle. Unfortunately, that was not enough.
How many Canadians have a family doctor who can play an instrumental role in the process of awareness, prevention, screening, and treatment for those at risks for preventable health problems?