TEDMED Blog

Genome sequencing – is it for everyone? Q&A with Amy McGuire

At TEDMED 2014, Amy McGuire, Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine, made us think twice about the unintended consequences of getting our genomes sequenced. We reached out to her learn more.

"You all know this, but it is worth stating the obvious: genomic sequencing is not an infallible prophecy of our future." - Amy McGuire [Photo by Jerod Harris, TEDMED 2014]

“You all know this, but it is worth stating the obvious: genomic sequencing is not an infallible prophecy of our future.” – Amy McGuire [Photo by Jerod Harris, TEDMED 2014]

 

What motivated you to speak at TEDMED?

I have seen many TED and TEDMED talks over the years, and have always found them to be incredibly thought-provoking and inspiring. To be honest, at first I was a bit intimidated to give a TEDMED talk. I questioned whether my story was worth telling to such a large audience, and I worried about stepping outside my comfort zone of a typical academic lecture to explore the more personal and humanistic side of my work. However, I feel very passionately about how our ability to learn increasingly more about our biological make-up through new genomic technologies influences how we think about the more existential question of who we really are. Giving a TEDMED talk allowed me to explore this question for myself and, I hope, to initiate a more public dialogue on this topic.

Why does this talk matter now? What impact do you hope the talk will have?

A complete draft of the human genome was published less than 15 years ago. It took 13 years and $3 billion to complete the Human Genome Project. Today, individuals can have their genome sequenced for just a few thousand dollars. For many, genome sequencing can provide important information to help diagnose and treat disease. Others are interested in having their genome sequenced because they want to know their future risk of disease. As genome sequencing becomes more widely available, individuals will need to make informed decisions about whether or not they want this information. I hope that this talk will help others understand the benefits and limitation of genomic sequencing and help make more reflective and informed decisions about obtaining their own genomic information.

What kind of meaningful or surprising connections did you make at TEDMED?

The most meaningful connection I made at TEDMED was with a delegate whose children are suffering from a rare undiagnosed genetic condition. They are very sick and she had been talking to researchers and physicians all over the United States about trying to get their genomes sequenced. After hearing my talk, she sought my help and I was able to connect her with my colleagues at Baylor College of Medicine who agreed to sequence her children’s genomes. While talking with her, it became clear just how difficult the diagnostic odyssey with her children has been. I am not sure if the genome sequencing will provide her with the answers she is looking for, but it meant a lot to me to hear her story and to be able to help her make the connections she was looking for.

3 Deadly Myths That Masqueraded as Knowledge in Women’s Health

by Betsy NabelPresident of Brigham and Women’s Hospital and Harvard Medical School professor.

Knowledge in science is something we never fully grasp because it is continually reshaped by new information. Information – such as the fact that women and men are different, from cells to selves – doesn’t change. Information is bounded in certainty. But we are at a particular disadvantage when the information that serves as the foundation of our limited knowledge is itself shaky. In the case of women’s health, myth and misinformation have been rampant and deadly.

Women's health leader Betsy Nabel at TEDMED 2014. [Photo: Sandy Huffaker for TEDMED].

“Humility is the secret ingredient that unveils truth.” Women’s health leader Betsy Nabel at TEDMED 2014. [Photo: Sandy Huffaker for TEDMED].

No myth has been more pernicious, or has cost as many lives, as the one that might easily have killed a patient of my own. It was 1983, and I was a young, hotshot cardiology resident, who of course, “knew everything.”  One night, a 32-year-old woman arrived in the emergency room where I worked. She described vague symptoms: aches, fatigue, a low-grade fever – nothing terribly specific. I ran some tests, didn’t find anything telling, and sent her home with Tylenol.  Two days later she came back with a full-blown heart attack.

The problem was, I knew that was impossible. I had been trained by the best, and the best had taught me what the best had taught them: Heart disease was a man’s disease, and the primary symptom of heart attacks was chest pain, which my patient did not have.

Thank goodness, that woman survived.  Her case has driven my career-long commitment to understand the difference between men and women’s health, and to raise awareness of women’s heart health in particular. Today we know not merely that women die of heart attacks, but, crucially, that women experience an entirely different profile of symptoms than men do.

In that case, we simply didn’t know what we were certain we did know. The same was true of a second myth that scarred women’s health for quite some time: that hormone replacement therapy improved women’s health. The model was simple: as women enter menopause, estrogen levels drop, and health problems ensue. The solution seemed intuitive and logical: replace the estrogen.

For years, the medical community relied on dogma — received knowledge — that these treatments worked.  Two in five menopausal or post-menopausal women received hormone replacement, in part to prevent heart disease.

But then scientists challenged the known, by putting this “knowledge” to the test. A multiyear, multimillion-dollar study by the National Institutes of Health – the Women’s Health Initiative (which is the brainchild of then-NIH Director Dr. Bernadette Healy) – examined more than 160,000 women and made a startling discovery. Not only did hormone replacement therapy not prevent heart disease; it actually caused it.

That visionary study — undertaken, significantly, by the public sector at sustained public expense — has saved countless women’s lives.

Today, a third myth is killing women, and this one remains enshrouded in misinformation. Just like we used to think heart disease was a man’s disease, today we think of breast cancer as the most important women’s cancer. Of course, in many ways it is. But lung cancer kills more women than any other cancer — nearly 200 every day, most within a year of diagnosis.

Yet, perhaps because of the stigma associated with lung cancer stemming from an inaccurate perception that the only way to get lung cancer is to smoke – which is especially wrong when it comes to women — research in this disease is chronically under-funded, especially measured by the harm it causes to individuals and families.

Women who have never smoked appear to be at greater risk of developing lung cancer than men who have never smoked. Of the 20,000-25,000 nonsmokers diagnosed with the disease each year, more than 60 percent are women.  Women also develop lung cancer at an earlier age than men. Yet, unlike breast and prostate cancer, for example, there is no widely accepted screening test for lung cancer.

Lung cancer thus presents a double myth: first, that it is solely a smoker’s disease; and second, that it is a cancer women don’t need to worry about.

These myths are a compelling reminder of the need for researchers and clinicians alike to treat men and women as what common sense tells us they are: different. That means clinical trials need to impose a gender lens at every stage of discovery and explore the unique effects of diseases and therapies on women as well as on men, which will lead to better health for both sexes.

An oft-shunned word, ignorance, carries great importance when we consider it as the driver of scientific inquiry, and thus, the molder of new knowledge. Yet when myths are widely believed to be facts, ignorance can kill. We owe half the world’s population much more than that.

Elizabeth Nabel, the President of Brigham and Women’s Hospital and a professor at Harvard Medical School, shared a personally revealing story on the TEDMED stage that pointed to how the limits of knowledge can be a weakness and how accepting our ignorance can be a strength. We are honored she has written an original piece for the TEDMED blog.

An Emerging Era of Vitalized Electricity: Q&A with Mark Levatich

At TEDMED 2014, Mark Levatich urged us to imagine the possibilities of a world vivified by electricity. Inspired by his enthusiasm, we reached out to him with questions about his talk, and any tips he has for young innovators.

"Electricity should be boring by now, but waves of revolution ripple up from initially small innovation to consume and transform our world.  Why, when we see the timeline, and the consistency of change, could we ever think the wonder is done?" - Mark Levatich at TEDMED 2014 [Photo: Kevork Djansezian]

“Electricity should be boring by now, but waves of revolution ripple up from initially small innovation to consume and transform our world. Why, when we see the timeline, and the consistency of change, could we ever think the wonder is done?” – Mark Levatich at TEDMED 2014 [Photo: Kevork Djansezian]

 

Why does your talk matter now? What do you hope people learn?

I knew my great-grandfather; he fought in WWI on horseback, and later lived in a household full of Apple products. We can imagine the transition of living in his world and expect the same scale of change in ours. The advances may not look rapid but we’re still rehashing the same tools of computers and programs. Leaps that challenge our imagination arise from fundamentally different abilities. That is why shape-changing plastic is primed to alter the course of human history. It can solve hundreds of existing problems, in unexpected, previously impossible ways. It also solves problems we didn’t recognize without an obvious solution. Nearly living plastic won’t be the final surprise during our lifetimes, but it’s primed to be the next.

In my talk, I described living plastic enhancing heart surgery, but I could have focused on braille, or keyboards, mice, drones, camera lenses, hearing aids, band-aid insulin pumps, capacitive batteries, bullet-sized tasers, electro-caloric heat sinks, ultrasonic tape, or woven sensors in clothes. The technology is already functional, but will see centuries of rehashing to creatively morph our world. It matters now because it will happen soon. It matters now because the pace of change is becoming mind-boggling, even for those of us now who are accustomed to surprise.

What advice would you give to other aspiring innovators and entrepreneurs?

If you are a young innovator, protect your naiveté and practice inception. As a budding innovator, you may find mentors and peers willing to help. I am sorry that their advice may be your greatest early challenge.

Any new skill takes repetition to master. Innovation by its nature should always yield conflicts with existing knowledge. To learn from a mentor’s advice, you must repeatedly sacrifice ideas. The sacrifice is active. It’s more than presenting concepts for appraisal. Ask your subject to share what their thoughts were just prior to their objection. Decipher the types of mental connections they used to crunch your idea, rather than source material. Meditating through and duplicating their thought process will permit you to absorb the strongest mental tools they have demonstrated. Repeating this process with diverse and accomplished people will allow you to compound the strengths of your mentors. In the end, the most important outcome is protecting your willingness to re-engage in deconstruction. Your naiveté makes your ideas vulnerable to overcorrection, and you must resist the social shock and keep practicing.

You may be presented with a plethora of unseen obstacles, a weakness of founding knowledge, an unrealistic sense of time, challenge, or concept placement in the existing landscape. All of these are irrelevant. The quality of your ideas matters only when you are primed to strike out and implement. Until that time comes, your goal should be to propose endless concepts. Exercise, through repetition, the mechanics of inception. The plentiful resource of criticism is not a crucible for your sword of conquest; it is, in fact, the hammer you wield to pound your innovation into shape.

The Promise of Personalized Medicine: Q&A with Gary Conkright

At TEDMED 2014, PhysIQ CEO Gary Conkright shared his perspective of how personalized, quantified health data is vital to preventing disease.  PhysIQ was recently selected to collaborate with USAID in their efforts to use such techniques to potentially control the spread of Ebola.  We reached out to Gary to learn more.

"Today, we’re on the verge of the next transformation in healthcare: Quantitative Medicine 2.0" - Gary Conkright, TEDMED 2014 [Photo by Brett Hartman]

“Today, we’re on the verge of the next transformation in healthcare: Quantitative Medicine 2.0″ – Gary Conkright, TEDMED 2014 [Photo: Brett Hartman]

What is the legacy you want your talk to leave?

I hope that my talk inspires just one entrepreneur to think “outside the box” to innovate a new medical device or procedure, or one physician to dare to adopt a “non-traditional” medical approach to deliver the best care and help prevent a preventable illness.  Failure should not be an option.

Speaking of thinking outside the box, can you tell us more about the work you are doing to help combat the Ebola crisis?

In my TEDMED talk, I spoke about how the next transformation in healthcare is quantified, personalized medicine.  This involves the comparison of a person’s physiology to their own unique baseline instead of population-based norms, like 98.6 degrees for “normal” body temperature. It is now possible to build a personalized baseline and to detect subtle but very important changes in one’s physiology, thereby enabling an early clinical intervention.  Seeing the potential of this approach, The Scripps Translational Science Institute recently asked PhysIQ to work with them alongside USAID to help address the Ebola crisis in West Africa.

One of the reasons why Ebola is so difficult to contain is that once someone is infected with the virus, they become contagious well before any symptoms appear.  Currently, the best Ebola risk management protocol requires patients to self-manage by taking their temperature twice a day. However, as with many diseases or exacerbations, the human body’s natural defense and self-management system kicks in to fight this virus almost immediately to protect and sustain the body, and ultimately life. These defense mechanisms manifest themselves in changes of easily measured vital signs like heart rate, respiration rate and blood pressure.

However, these same vital signs normally vary quite dramatically throughout the day as a person goes about their daily living.  For example, when asleep, a heart rate of 40 beats per minute could be considered “normal” as would a heart rate of 120 beats per minute after walking up a few flights of stairs, but someone’s heart rate can be “within the normal range” of 60-100 but still be a sign of physiologic decompensation if inappropriate in the context of other measured parameters.  These normal dynamic fluctuations can mask the subtle changes that are a direct result of the body’s defense response.

When we holistically compare these multiple key physiologic parameters to the person’s unique baseline, the expected or “normal” physiological response can be removed, leaving the abnormal response that is fighting the disease.  We will soon start field testing in West Africa to validate this approach, which – we hope – will work for any progressive disease where early detection can save lives.

What advice would you give to other aspiring innovators and entrepreneurs?

The mystique of entrepreneurship excites the human spirit, but bringing a disruptive innovation to market is very hard work, and not for the faint of heart.  The highs are exhilarating and the lows are harsh, and the cycle time between these two extremes is often very short.  But, for those who are passionate about making a difference, and who have the risk tolerance, emotional fortitude and – perhaps more importantly – the support of family, there is no better career option.

Tell Us: What’s Your Medical Metaphor?

Do you have a barking cough or butterflies in your stomach? Are you waging a war against an army of bacteria? Perhaps you are approaching life with chronic disease as a marathon, not a sprint – with bumps in the road on your journey to health.

Whatever your health condition, TEDMED 2014 speaker and physician storyteller Abraham Verghese believes that medical metaphor is key to better understanding what’s happening in your body. Studies show that when physicians use metaphor, patients are more satisfied with their communication. In his TEDMED talk, Abraham encourages patients and healthcare providers alike to invent metaphors to help bridge a widening communication gap.

“It’s a peculiar atrophy of the imagination at a time when our scientific imagination knows no bounds. I think our right brains are churning, wanting to label and make colorful and to connect, but the imagined constraints of science and data have introduced a peculiar self-consciousness.” — Abraham Verghese

Now, it’s your turn. In his blog post, Abraham invites you to create more eponyms, more metaphors, and more colorful ways of capturing this incredible time we live in. So we invite you to tell us your favorite medical metaphor – or create one of your own – tagging it with #mymedicalmetaphor via Twitter. Or, if your metaphor goes beyond the boundaries of 140 characters, try tagging it on Facebook or any other platform you use.

Next week, Abraham will choose his three favorites. If your metaphor is selected, we’ll send you a copy of Abraham’s book, Cutting for Stone.

Go on – flex that right brain. Good luck!

Healing Metaphors – A Q&A with Abraham Verghese

At TEDMED 2014, physician and author Abraham Verghese shared a compelling and original perspective on the impact of language on medicine. In the Q&A below, he reveals more about how embracing our creative selves can help preserve the humanity in healthcare.

Abraham shares why it's important to breathe life back into medical language. [Photo: Kevork Djansezian, for TEDMED]

Abraham shares why it’s important to breathe life back into medical language. [Photo: Kevork Djansezian, for TEDMED] 

Why does this talk matter now? What impact do you hope the talk will have?

I was struck by the colorful metaphors that peppered medical descriptions in years past – the “strawberry” tongue, the “Mulberry” molar, the “Apple core” lesion of the colon, and so many more. I’ve found it so hard to believe that – with the avalanche of new diseases, new science and new technology – we simply haven’t developed new metaphors quite as colorful as the “saber-shinned tibia” or the “crackpot’s skull” of years past. It’s a peculiar atrophy of the imagination at a time when our scientific imagination knows no bounds. I think our right brains are churning, wanting to label and make colorful and to connect, but the imagined constraints of science and data have introduced a peculiar self-consciousness. I’m hoping that my talk encourages us to create more eponyms, more metaphors, and more colorful ways of capturing this incredible time we live in.

What is the legacy you want to leave?

I’d like to think that, in the era of tremendous advances in science and in medicine, I tried to keep us from losing sight of the patient, that vulnerable human being who gave us the great privilege of being with them at their time of need. What that human being needs in addition to our robotic technology, our beautiful diagnostic tools, is a caring relationship with another human being. I’d like to think that I spoke strongly for that and that I introduced a generation or more of students to the bedside and to that special privilege.

William Osler is quoted as saying that he desired no other epitaph “…than the statement that I taught medical students in the wards, as I regard this as by far the most useful and important work I have been called upon to do.” I don’t know that he actually used that on his tombstone, but I understand the sentiment. Every single student I work with at the bedside (even though the process might seem inefficient to be working with just one or two students) has the potential to go out and, in a lifetime, care for hundreds and thousands of patients. So, if you influence them well, you truly have leveraged something in the best sense of that word. I’d like my legacy to be about that work, both at the physical bedside but also metaphorically, and having brought readers and listeners to that sacred space and having perhaps conveyed in every manner that I could, the romance and passion and privilege of being in medicine. It’s not a business and never will be. Even though it enriches a lot of people, and even though it seems to be very much a business, medicine will always be a calling.

What’s next for you?

I have in mind the shaping of something I am calling “The Center for the Patient and Physician,” which I think of as a place to explore every aspect of the patient-physician relationship. At one level it will be pedagogy, teaching at the bedside and refining methods for teachers. But it will also be bringing in folks from a multitude of disciplines. For example from anthropology and ethnography to look at the patient-physician interaction, or tapping into bioengineering and design schools to look at the spaces where we interact. Perhaps, using population health sciences to look at influences on large populations of certain styles of physician-patient relationship. Or serving as a locale where postdocs and scholars who are interested in any aspect of this, can develop their craft – from studying empathy, compassion and caring to developing the next generation of pocket tools.

Are there any action items that you want your viewers to take?

Invent a metaphor that captures the work you do! If something could be named after you, what would it be? Go ahead, don’t feel shy!

Learning by accident: Q&A with Patricia Horoho

Patricia Horoho, Lieutenant General in the U.S. Army and the first woman and first nurse to serve as the Army’s Surgeon General, revealed how health care can cause harm by sins of commission and omission. We followed up with Patricia to answer a few additional questions about her topic.

Patricia Horoho at TEDMED 2014 [Photo: Sandy Huffaker for TEDMED]

Patricia Horoho at TEDMED 2014 [Photo: Sandy Huffaker for TEDMED]

What motivated you to speak at TEDMED?
TEDMED presented a wonderful opportunity to present a difficult subject in a supportive environment. The other speakers, facilitators, and the audience provided a unique opportunity to participate in a remarkable forum. I also saw TEDMED as an opportunity to clearly demonstrate that Army Medicine isn’t afraid to confront the issues of medical errors and harm.

Why does this talk matter now? What impact do you hope the talk will have?
The facts aren’t new – we’ve known about the tremendous cost in lives and health of medical errors for at least a decade. Many leading healthcare institutions and researchers have addressed the issue, but we still haven’t made significant progress in addressing the underlying root causes. TEDMED allowed me the opportunity to highlight existing research and present the issue from my vantage point as the Army Surgeon General. I have traveled around the globe since TEDMED talking to Army Medical teams about the subject of preventable harm.

What kind of meaningful or surprising connections did you make at TEDMED?
The opportunity to talk with Delegates after my talk was incredibly rewarding. Many shared with me their personal experiences of medical harm or the challenges of getting their organizations to recognize and address the problem. What I heard over and over again was that the fear of litigation or the shame of making a human error kept good people and organizations from openly discussing the issue.

How has the military responded to your talk and your message about preventable harm?
I found that Army Soldiers and their families appreciated our collective willingness to discuss preventable harm on a national stage. Thousands of military health professionals are engaged in the detailed work that is required to turn the dial down on preventable harm.

I think the military medical community received the talk generally the same way the civilian healthcare community did. As you might expect, there were at least two major groups: 1), those who recognize the problem of preventable harm across American medicine and welcome the discussion even though it is uncomfortable and 2), those who don’t believe there is a problem or think that the issue is being blown out of proportion. The latter group often doesn’t appreciate the difference between “harm” and “preventable harm.” In medicine, we talk about “adverse events” which is a sterile euphemism for harm. However not all adverse events are the same. Some, in fact most, occur due to circumstances that are not under the control of healthcare professionals. When we talk about preventable harm, Army Medicine is addressing both the human and system errors that reach the patient and cause unnecessary harm. These human and system errors can be anticipated and we can improve our processes to ensure that they don’t reach our patients.

What’s next for you?
In the next weeks and months, I will continue to travel to Army Medicine facilities around the world speaking face-to-face with the leadership of every Army hospital about how we will eliminate preventable harm. In addition, I have opportunities to share Army Medicine successes and challenges with numerous members of Congress and oversight committees.

Entrancing dance: Q&A with Art of Motion Dance Theatre

Art of Motion Dance Theatre, known for using dance to explore body and mind as creative instruments, performed a piece celebrating the divinity of nature at TEDMED 2014. We reached out to learn more about their art.

Art of Motion Dance Theatre, a modern repertory dance company, at TEDMED 2014. [Robert Benson for TEDMED.]

Art of Motion Dance Theatre, a modern repertory dance company, at TEDMED 2014. [Robert Benson for TEDMED.]

What is the legacy you want to leave? 

We hope to have vicariously reached our audiences and impacted the way they see dance, understand the complexity of the human body, brain, mind and spirit. The AOMDT’s unique movement vocabulary and repertoire seeks to impact communities with its cocktail of motion fusing elements of street dance with eastern and western vocabularies including the formality of classical ballet, the abstraction of modern dance and the discipline of yoga. We rely and thrive on the collaborative process.

Art of Motion Dance Theatre at TEDMED 2014. [Sandy Huffaker for TEDMED.]

Art of Motion Dance Theatre, a modern repertory dance company, at TEDMED 2014. [Sandy Huffaker for TEDMED.]

What is next for Art of Motion Dance Theatre? 

The AOMDT continues to create new work, perform, tour, teach and collaborate with musicians, orchestras, costume and lighting designers. We are working on varied projects from a “Salute to Disney Homage” to an evening of live music to a new, avant garde work with a NYC composer, Richard Carrick. Richard wrote the score for “Prisoner’s Cinema,” and created a film based on research of prisoners in solitary confinement. We are also creating an in-depth evening inspired by the “Secret Life of Plants.”

Learn more about AOMDT’s experience at TEDMED 2014 here or check out their website for upcoming performances.

What gets your heart racing? Q&A with Foteini Agrafioti

At TEDMED 2014, Foteini Agrafioti raised concerns about today’s passwords and IDs, and shared how your body may provide easier, and more accurate, forms of identification. We reached out to her to learn more about what inspires her work.

"The million dollar question is are biometrics secure? James Bond would have you believe so." - Foteini Agrafioti on the TEDMED 2014 Stage [Photo: Kevork Djansezian]

“The million dollar question is are biometrics secure? James Bond would have you believe so.” – Foteini Agrafioti on the TEDMED 2014 Stage [Photo: Kevork Djansezian]

 

What motivated you to speak at TEDMED?

I felt the need to provide a different perspective on biometric security. Our world is evolving so quickly, and biometric authentication has made its way into our lives. I want people to understand the challenges, limitations and implications of this technology.

Who or what has been your main source of inspiration that drives you to innovate?

There is no specific source of inspiration. I go by two rules: 1) never get comfortable and 2) surround myself with people who want to disturb the status quo. It all starts with crazy “what ifs…”. We then quickly test those hypotheses and that’s how the innovation journey begins.

What advice would you give to other aspiring innovators and entrepreneurs?

Obsess! If you are to challenge the status-quo, you had better obsess about it. Protect your vision in the face of abundant skepticism and never give up. You won’t make an impact just by trying – you must go all the way. In the last decade, I can recall many times that people told me that I was set up for failure. Wouldn’t it be a shame if I had believed them?

What’s next for you?

After leaving Nymi, I joined Architech and founded Architech Labs to do research in the area of human computer interaction. My vision is to build technologies that understand the underlying factors of human behaviors and habits. I am now experimenting with affective computing – the engineering field that studies the human emotion. I believe that emotional intelligence is the last barrier to meaningful human-computer interaction and I am thrilled to be working on this.

A chat about guts and brains

Join TEDMED Speaker John Cryan for a Twitter Chat about the gut-brain connection this Thursday, March 19 at 2:30pm.
Do you want to learn more about the research behind John Cryan’s TEDMED talk, “Food for thought: How gut microbes change your mind”?

As part of Society for Neuroscience’s #BrainWeek, TEDMED is hosting a Twitter Chat with John from 2:30-3:30pm (ET) this Thursday, March 19.

Delve a little deeper into John’s talk and learn more from him about the gut-brain connection.

Tweet your questions using the #TEDMED hashtag!

Meanwhile, watch and share John’s talk to learn more and check out his recommended reading + podcasts.

We’re looking forward to an insightful, collaborative discussion and hope you will join us then!