Being Wrong Can Help Get It Right

By guest contributor and TEDMED 2015 speaker Anthony S. Fauci, MD

One of the best things I have done in my career is admit that I was wrong.

In the early days of AIDS – before we had the first effective treatments – I was a complete believer in the tried-and-true research-to-pharmaceutical pipeline. This rigorous process, based on the gold standard scientific and regulatory approach to clinical trials, usually required many years to run its course. However, for people living with HIV infection in the 1980s, that was time they did not have.

In the late 1980s, the frustration of those affected by HIV/AIDS was reaching a breaking point. Their anger about the pace of research to develop HIV treatments was often directed at me, as I oversaw much of the government’s HIV/AIDS research as director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health. I supported what I knew to be an effective research process. However, it was not until I listened to the activists and began to appreciate their concerns by imagining myself in their place, and by inviting them into my office when they demonstrated in protest on the NIH campus that it became clear that something had to change. At that moment, that something had to be me. I ended up working with the activists to develop an unconventional “parallel track” for drug development, one that provided access to experimental drugs for patients in need at the same time that rigorous clinical trials were still ongoing.

A healthy human T cell uninfected by HIV/AIDS.

A healthy human T cell uninfected by HIV/AIDS.

Change, especially the type of change that asks us to question the systems on which we have built our careers, can be difficult. It requires us to at least question and sometimes change our beliefs and habits, and step into unfamiliar territory. Embracing flexibility is sometimes more difficult than maintaining the status quo; however, having this mindset can generate novel solutions. In the case of HIV, by changing the research paradigm and engaging HIV activists as partners in the research endeavor, we were able to develop effective HIV drugs faster, ultimately saving millions of lives.

As the HIV/AIDS pandemic has evolved over the last 35 years, being open-minded remains crucial to defeating this disease. We must continually step back, reassess, look at the larger picture, and identify solutions to seemingly intractable challenges.

Today, science has presented a clear opportunity to end the HIV/AIDS pandemic. We now know that everyone infected with HIV should be offered antiretroviral drugs as soon as the diagnosis is made, for their health and to prevent further transmission of the virus. Last year, NIH-funded research provided strong evidence of the advantage of beginning treatment soon after diagnosis rather than waiting until immune system damage occurs. Clinical trials also have demonstrated that HIV treatment benefits not only the infected individual, but also his or her sexual partners, as lowering the level of virus in the body reduces substantially the risk of transmitting it to others.

Together, HIV treatment and other proven prevention interventions – such as pre-exposure prophylaxis, or PrEP, a single daily pill containing two anti-HIV drugs – provide a powerful toolbox for ending the HIV/AIDS pandemic. If the tools we already have for HIV treatment and prevention were widely implemented, and all HIV-infected individuals were identified and placed in stable, effective medical care, and uninfected individuals in high risk situations were provided prevention tools including PrEP where appropriate, more than 90 percent of new HIV infections worldwide could be prevented each year.

Sadly, the rate of new adult HIV infections has held steady at about 2 million per year since 2008, indicating that despite innovation and advances, we are still far short of our goal of ending AIDS as a major global health problem. Although we have the tools and knowledge to accomplish this goal, substantial barriers still stand in our way. Economics, race, gender, stigma and discrimination all play a role in preventing people from accessing prevention tools, getting tested, connecting to care and accessing treatment.

Hard-won scientific advances collide with these barriers, impeding the progress that research can bring. Just as we did in the early days of the AIDS epidemic, we must now step back and reassess. We must ask ourselves how we can think differently about bringing about an end to this pandemic by more effectively scaling up the powerful tools of treatment and prevention that we know can bring HIV/AIDS to heel. As I have learned, questioning and sometimes changing how we do things can be the first step toward getting things right.
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Anthony Fauci: Learning from the AIDS epidemicIn his TEDMED 2015 talkNIAID Director Anthony S. Fauci, M.D., shares his deeply personal account of how he had to bend certain overly rigid rules of science to fit with the emergent needs of HIV/AIDS patients and activists.

In the system of American science, caution has overtaken creation

By guest contributor and TEDMED 2015 speaker Roberta Ness

The scientific community is unwell. Worse, the hospital to which it has been taken is utterly unsuited to cure it. Young professionals feel that the system does not promote, but instead strangles, their creative dreams. The result: the most extraordinary potential for progress in history is being squandered.

InnovationInnovation is society’s engine of progress– our instrument for hope. Our modern love affair with innovation leads us to desire having as much of it as possible and to fear its loss. A quick web search for “innovation” yields about as many hits as the word, “boyfriend”. Yet, our system of science from its funders through its institutions, does not allow practitioners to reach their full creative potential. I know this firsthand because I have encountered so many of these frustrated scientists.. Nearly every time I lectured at a research university about how to improve innovative thinking, a young person would stand up at the back of the room during the question and answer period and say something like, “Dr. Ness, this was inspirational, but you are proposing really radical new ideas. If I tried to do what you counsel, I would never be able to get funded or be published.” I heard this lament perhaps a dozen times when finally it struck me, “duh– there’s a big problem here, and it is not due to these young, bright minds.”

The problem, I came to discover in writing my most recent book The Creativity Crisis is that caution has overtaken creation within the system of American science. Society begs for revolutionary advancement but spends its dollars on tangible products. Ideas are conceived as “individually owned” and intellectual property is shielded by patents rather than shared for the benefit of all. The hierarchy and insularity of science stymies rich collaborative possibilities, so, for instance, the historic opportunities offered by crowdsourcing goes unexploited. A suffocating burden of federal and state restrictions and regulations continue to grow as society becomes increasingly apprehensive about the harms that science can bring.

The result of this perfect storm is that the largest and most difficult problems science must solve-– climate change, emerging epidemics, social inequity, Alzheimer’s disease-– rage unabated. I believe we must find solutions to these disasters-in-progress that are far more radical than the current system permits.

Yet, not all is doom and gloom. Science continues to march forward at a prodigious pace, even if that march often produces things less necessary than nice. Some institutions such as the Howard Hughes Foundation and Google have incorporated a series of systems changes for the focused purpose of tending and nurturing creative innovation.

We need not be satisfied with a system of science that fails to achieve its full potential for advancing societal well-being. To implement original solutions to society’s most threatening problems, we must bring creation and caution into equipoise. The Creativity Crisis examines in detail the ills of modern science and multiple remedies that, by abandoning convention, may contribute to fixing the broken system. I can only hope that this book and related TEDMED talk will launch a discussion in which all of you will help to reinvent the scientific ecosystem. I believe that if you open your minds and your hearts to the potential for creative disruption, together we can solve the creativity crisis and unleash possibility.


Roberta Ness TEDMED Artist Illustration_FotorIn her TEDMED 2015 talk, innovation expert and physician-researcher Roberta Ness imparted her wisdom for combatting science’s creativity crisis and sparking the type of revolutionary innovations that science and medicine so desperately need.

Imagining a culture of healthier childhood

TEDMED speaker and pediatric endocrinologist Louise Greenspan has been a co-investigator in a uniquely comprehensive longitudinal North American study following young girls through puberty. We asked her to design a fantasy health intervention with unlimited resources. Here’s her vision:

Image courtesy of Shutterstock

We all know the expression, ”It takes a village to raise a child.” My fantasy intervention is based on that concept, however it expands on what the village is and what it provides. Today’s industrialized societies have fractured the extended family, resulting in most parents not having support from their own elders in raising their children. Many young parents don’t have the basic knowledge they need to support their growing families in healthy ways. While concepts about child rearing naturally change between generations, there is still a lot to be learned from those who have gone before us.

I’d love to support an intervention that provides education and assistance to families beginning from the moment they find out they are pregnant. The idea would be to start with pregnant mothers, by providing nutritional education and enhanced psychological and educational support, regardless of socioeconomic status. This education would take place in classes with members of the neighborhood who are also pregnant, thus building community.

After delivery, new parents would be encouraged to breastfeed and learn how to nurture their babies by visiting health workers who could come into the home. As the children grow, these home health workers would provide assistance and education to parents on how to feed their children, how to support their developing brains, and also how to discipline them. This way, parents could learn the facts they need to know, as well as start to develop a healthy authoritative approach to setting limits with their children. These trained workers would be available for parents to turn to for advice, to supplement the way some of us were once able to turn to our mothers and grandmothers for advice (but with the latest in knowledge and skills). The health workers would also set up support groups for families who live near each other or hold groups and classes as well.

At age 3, all children would be offered high quality preschool with a healthy lunch provided for all, and the parental support and education could continue, informed by these community schools. Parents would learn how to deal effectively with the challenges presented by their ‘threenagers’ and other toddler challenges. At entry to elementary school, the support and education would be augmented so that it would also be provided directly to the children themselves while also continuing with their families. All kids would have weekly lessons in cooking and healthy eating, and be active participants in growing and preparing healthy food at their school as part of the curriculum. Parents and guardians would participate in sessions about how to feed their children healthfully, assist their children educationally, as well as continue to be given tools about how to effectively parent their children.

Health Education would be taught to the children directly, starting in kindergarten with practical life skills, including cooking. In the early grades, the education might focus on the importance of eating a healthy balanced diet and on getting enough physical activity and sleep. As the children age, lessons would include classes on their body and health, with puberty education starting in third grade, separate from sex education, which could start in sixth grade. In third and fourth grade, children would learn about puberty and the body changes that will start and happen to everyone over the next few years. In middle school, kids would continue to discuss puberty, but would now have discussions about sex and sexuality. In high school, these topics would be discussed in more depth. The lessons learned about cooking, healthy eating, and exercise would continue throughout these years. There would also be age-appropriate mindfulness-based stress-reduction education through all of the grades, with an emphasis on this in high school. Parenting assistance and education throughout these years would reinforce these concepts and would perhaps also focus on how to enforce healthy sleep habits and limitations on screen time. The outcomes examined in this intervention would include rates of childhood obesity, early puberty, and psychological and educational diagnoses issues across the socioeconomic spectrum.

Could an intervention like this help reduce childhood health care disparities? Could it reduce parental stress and anxiety? Might it lead to more teens heading to college, thus reducing educational disparities? It is my dream to be able to study the effects of such a holistic, longitudinal, health education intervention. My hunch is that it could be game-changing.

Louise Greenspan is co-author of the The New Puberty: How to Navigate Early Development in Today’s Girls. Learn more by watching her TEDMED talk, “Weighing the causes of early puberty.”

Precision medicine for understudied populations

by Roxana Daneshjou, guest contributor

Precision medicine, which leverages a patient’s genetics to help make medical decisions, has the potential to revolutionize medicine. Its applications are numerous: from predicting who may have an adverse reaction to a medication, to allowing targeted therapies of cancer with particular mutations. In 2015, President Obama’s State of the Union announced an initiative to further our understanding of precision medicine and to build the infrastructure to implement it. An important part of this initiative is building a large diverse research cohort to help discover disease-gene and drug-gene associations. The key word is diverse – because genetic risk factors can be population-specific. In the past, individuals of African, Hispanic, and Middle Eastern ancestry have been understudied. Only by including individuals from all different ancestral backgrounds can we hope to implement precision medicine in an inclusive way.

In 2011, Russ Altman’s research group was pondering the importance of inclusive precision medicine when it became clear that several studies examining the baseline genetic variation across the globe, 1000 Genomes and the International HapMap Project, had an underrepresentation of Middle Eastern populations. As a scientist of Iranian descent who had undergone direct-to-consumer genotyping with 23andMe, I wondered how to make sense of my data when no baseline genetic study of the Iranian population existed. When scientists Dr. Mostafa Ronaghi and Dr. Pardis Sabeti approached Dr. Altman’s group about the idea of creating such a baseline, I was immediately interested. Through the generous support of the PARSA Foundation, we began our journey to create a genetic baseline of the Iranian population.

Our first roadblock appeared when we spent months exploring the feasibility of collecting samples in Iran. Due to the economic sanctions at that time, it turned out that establishing a collaboration with an Iranian university and collecting samples there would be nearly impossible. In the United States, however, the Iranian diaspora has created a sizeable population generally representing the diversity of sub-ethnic groups in Iran.  We turned to this population to collect our samples and conducted high coverage sequencing of 77 healthy individuals. This data can be used for answering some questions about the population’s history and also as a baseline for scientists interested in studying disease in this population.

Since our aim is to enable other scientists to answer important questions about disease risk and treatment in individuals of Iranian ancestry, we are committed to sharing our data. Our website, irangenes.com, already has summary data of population level genetic variants. We’re currently working on uploading all of our genomic data on a secure server so that scientists can submit proposals to use our raw data.  Since the sanctions on Iran were lifted in January 2016, we have corresponded with scientists in Iran who are using our summary data to help advance precision medicine there. We are also working on uploading all of our genomic data to a secure server as a part of the precision medicine initiative so that scientists can submit proposals to use our raw data.

In addition to the medical applications, we were also interested in learning more about the Iranian population’s history through its genetics. Based on our data, the Iranian population is genetically distinct from other Middle Eastern populations. However, it is important to remember that any two humans share 99.9% of their genome. Moreover, as has been seen in previous studies in other populations, the different Iranian sub-ethnic groups have a lot of genetic overlap. Though capturing the breadth of human genetic diversity is important to inclusive precision medicine, these studies also show us that – at our core – we are a singular human family.

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Roxana Daneshjou is an MD/Ph.D. student at Stanford and is supported by the Paul and Daisy Soros Fellowship for New Americans.

2015’s Research Scholars: Another Peek into What Makes a Great TEDMED Talk

Earlier this year, we shared details around some of the critical elements that support TEDMED’s editorial process. Specifically, we shared our core values, code of ethics, speaker selection process and the addition of TEDMED’s inaugural Editorial Advisory Board (EAB). As we explained, our EAB members advise TEDMED on topics, themes and speakers that should be considered when creating our annual stage program.

Now, as we prepare to announce this year’s program and speaker line-up, we want to give you a peek into another significant group that contributes to our editorial process: the TEDMED 2015 Research Scholars.

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When TEDMED curates the talks that are being considered for the stage each year, topics range literally from A (autoimmune disease) to Z (zona pellucida). To assist us with reviewing and researching the deep science behind potential topics, themes and speakers, TEDMED relies on outside feedback from our Research Scholars who are a diverse group of carefully selected experts.

Our Scholars are equipped with the professional training, objective knowledge and institutional credibility required to give TEDMED a wealth of insights, informed perspectives and thoughtful suggestions for further queries and investigation. TEDMED assembles Research Scholars from across the biomedical spectrum: university faculty, post-docs, grad students, public health professionals, entrepreneurs, science journalists and medical students from leading institutions and associations.

It’s no mystery why our Scholars break away from their busy schedules to volunteer their time in support of TEDMED’s mission. Each is a person of extraordinarily generous spirit; and, each is passionate about making a difference in health and medicine. We are proud to count the TEDMED Research Scholars as valued members of the TEDMED community…and we thank them for their outstanding contributions.

Without further ado…we are honored to recognize the Research Scholars for TEDMED 2015. See the full list here.

Stay informed as details around TEDMED 2015 continue to be shared. Follow us on Twitter and Facebook, and consider registering today for TEDMED 2015 in Palm Springs, November 18-20, at the beautiful historic La Quinta Resort! We’ll begin announcing details of the program next week.

“Think Big”: Q&A with Eric Chen

At TEDMED 2014, Eric Chen urged us to think big and never stop asking questions. Halfway through a very exciting first semester at Harvard, Eric Chen checked in with TEDMED to answer a few questions we had about his talk.

What motivated you to tell your story on the TEDMED stage?

I see huge untapped potential in kids and nonscientists all over the world, especially in this day and age when the Internet has given all of us so many resources unavailable in the past. However, so many people seem to be intimidated by scientists and the idea of research—they don’t believe they can do something so seemingly complex or sophisticated. I saw the TEDMED stage as a platform from which I could share my story and let them know about their own potential.

Eric Chen takes the stage at TEDMED 2014. - Jerod Harris

Eric Chen takes the stage at TEDMED 2014. – Jerod Harris

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

In today’s age, we will need more and more scientists and innovators to tackle the challenges on the horizon—from pollution to overpopulation. To solve these daunting problems, we will need bold, daring thinkers not afraid to ask the unasked question. It is important that everyone knows they can contribute, regardless of their background or situation, and that a groundbreaking discovery can be just a question away.

What is the legacy you want to leave?

I hope that my message can encourage more youth and nonscientists to think big, and to participate in science, research, and medicine. I would like to help spread the democratization of knowledge, science, and medicine.

Taking Eric’s advice, we didn’t stop asking questions there.  In the spirit of curiosity, we tacked on a few fun questions for your enjoyment:

If you could meet your 10-year-old self, what would you tell him?

I would tell him that I now know how to time travel, and then go collect my Nobel Prize.

If you were immortal for a day, what would you do?

I would completely wreck the world record for most time with breath held underwater.

If you could meet anyone, living or dead, who would you meet?

I would meet Richard Feynman. I’ve always admired not only his scientific ability but also his curiosity and sense of humor.