There are plenty of ways to engage with our TEDMED 2020 class of Hive Innovators. Whether in a Hive Innovator Meetup, the Community Lunch, where we will have the opportunity to explore the Innovator’s “What If” questions, or through TEDMED Scout: Your AR Guide to Innovation. This year, the Hive Innovator experience is powered by our partner TBWA\WorldHealth.
At TEDMED 2020, the Hive Innovators will participate in curated meetup discussions around a topic that aligns to their work. Innovator Meetups are open to everyone in the TEDMED Community onsite and are an exciting opportunity to learn more about the Hive Innovators and the work they do to shape a healthier humanity. This year’s Hive Innovator Meetup topics include: New Age Diagnostics, Personalizing Digital Health, New Models of Mental Health Care, Mapping Human Health, The Power of Medical Knowledge, and Health Techquity.
Community Lunch: Celebrating Innovation with the Hive Innovators and the TEDMED Community
Delegates are invited to join the Hive Innovators and the larger TEDMED Community members for a lunch inspired by innovation. Get to know the Hive Innovators by joining them for lunch at the tables marked with their “What If?” Questions.
TEDMED Scout: Your AR Guide to Innovation
Embracing this year’s theme, “Make Way for Wonder”, TEDMED joined forces with TBWA\WorldHealth to curate an experience that celebrates innovation and unlocks our sense of wonder. Throughout the event, Delegates can unlock an Augmented Reality experience, we are calling TEDMED Scout: Your AR Guide to Innovation, with their phones to get a closer look at the ideas each innovator represents. And, a virtual concierge will guide onsite networking connections between Innovators and our community like never before. After the event, the experience will live on digitally, giving anyone in the world access to the 2020 TEDMED Hive Innovators and the amazing ideas they are working to make a reality.
Register today to join us onsite in Boston and experience TEDMED 2020 in person!
TEDMED: In your 2018 TEDMED Talk and exhibit, your work depicted a digitized future. What have you learned through the process of creating this work?
Marilène Oliver: I would say that they also depict a digitised present: the majority of my daily life is spent creating and moving packets of data around and the fact that I can now be represented as a high-resolution scan dataset pretty much sums how I understand and know myself! Understanding and questioning how we are digitised – both our physical bodies and our digitized activities – is fascinating for me, as it offers powerful metaphors to think about what and who we are becoming in the digital age. Equally, finding the right processes and materials to creatively re-export and materialise that scan data has been very important. There is no question that transparent materials were best for making my early stacked sculptures, then I needed to work with neon materials so that certain features could be highlighted and tagged. Now I am working with virtual reality: material concerns could disappear completely. Reflecting on the choices that I make in order to create artworks made from scan data teaches me a lot about my relationship to digitisation.
TM: Your work has strong scientific elements in it. Have you always had an interest in science?
MO: My interest in science has grown as my work has developed. I soon realized when I started working with scan data that many of the possibilities of the technology were not available to me (both practically and poetically) as long as I didn’t understand the science behind it. I started by reading as much as I could and trying to teach myself but when I needed more structure and reliable content I applied to do a long distance MSc in Imaging at the University of Edinburgh. This has helped me greatly, not only to understand the actual science of imaging better, but also to understand the rigid structure and pressures of scientific research compared to artistic research, but there is so much I still don’t know and it feels impossible to keep up! I strongly believe in interdisciplinary research and now at the University of Alberta I have been able to bring together a fabulous team of radiologists, computer scientists, digital humanists and nurses. We are currently developing projects that will allow us to create virtual and augmented reality artworks which is very exciting.
TM: In your Talk you discuss the challenges using MRI data posed, such as it being slow to acquire and could not be reformatted, which led you to use CT scans for your muse Melanix. What other challenges did you encounter when creating your work using digitized bodies?
MO: As I explained briefly in my talk, one of the most challenging times for me was moving to Angola and waking up to the fact that Melanix was not only a medical dataset that I needed to think about as a creative resource and material, but also a symbol of first world privilege. Until moving to Angola, I had taken scan data more or less for granted, but working with Melanix in Angola where the majority of the population had little or no access to public healthcare, let alone the possibility to be scanned, caused me to radically rethink my practice and my relationship to data acquired to cure rich white people when there were still countries with endemic malaria and people still die of tetanus poisoning every day. Making art with medical data in Angola demanded I realize my position as a privileged white woman of colonial heritage, which ashamedly I hadn’t considered until that time. This technology and these concerns are far from global and digital privilege is a huge issue that threatens to exacerbate the disgusting inequalities in the world.
The ethics of data anonymization is also something I find problematic. I understand it in medical research, but when it is being used to create artworks, I question whether this is always the ‘right’ solution. I have made scores of artworks using the Melanix dataset yet I have no idea who the original subject of the scan is. I would hope the work I have made would please the original subject if she were to know about it, but as we learn more and more how the digital data we generate is used and abused by government and corporations and other individuals, I think there has to be better discussions and global agreements about the ethics of data ownership.
TM: What are you currently working on? What is your inspiration for this work?
MO: Since my talk, I have made two virtual reality artworks and sculptural installations using a new high-resolution MRI dataset acquired with researchers at the University of Alberta. Deep Connection is the first work we made using virtual reality and was inspired from experiences using the Body VR app which allows 3D medical scan datasets to be loaded into virtual reality space as a semi-transparent block of data.
When the viewer enters the Deep Connection, they see a scanned body lying prone in mid-air. The user can walk around the body and inspect it, lie underneath it and walk through it. The user can put their head inside the body: dive inside and see its inner workings, its lungs, spine, brain. Using a virtual hand, they can then take hold of the figure’s outstretched hand, trigger a 4D dataset and see figure’s heart beat and lungs breathe. When the user lets go the hand, the heart stops beating and the lungs stop breathing. Deep Connection has an interactive soundscape made by Gary James Joynes made from recordings of the MRI scanner. When the user holds the figure’s hand a human voice sings a beautiful mourning song. The VR experience is part of a sculptural installation created using the same MRI data. The installation is comprised of a row of 3 sculptures of bodies into which the VR hardware is embedded/housed. The sensors are embedded in the chest of the outer two figures, and the inner figure holds the headset, controller and guards the workstation.
Massive Science is a digital science media publication that brings together scientists and the science-curious public. The team at Massive joined us at TEDMED 2018 and covered talks by various speakers including Yaniv Erlich. Check out their coverage of Yaniv’s TEDMED 2018 talk below.
Humans have an inherent social drive, and in this age of social media, we are more connected than ever. However, by constructing the world’s largest family tree comprising 125 million people, computational geneticist Yaniv Erlich, has shown that some of these connections run deeper — down into our genes. Erlich, who is a professor and researcher at Columbia University and CSO of MyHeritage.com, is revolutionizing the field of genomics by linking genealogical data provided online by volunteers to DNA with striking accuracy. Earlier this year, Erlich and his colleagues sent a shock wave through the field of genetics by showing that it is possible to uncover the identities of males who have taken part in “anonymous” genetic research without ever matching their data to a sample of their DNA. All you really need is the internet.
“Smoking…determines ten years of our life expectancy, which is twice as much as what our genetics determines.”
Genomic data is incredibly powerful. It can reveal migration patterns, or uncover interesting details like the distance people move from their place of birth to procreate. But more importantly, genomic data allows us to ask questions about human health, like how much genetic variations account for differences in individual life-spans. Large family trees allow us to analyze both close relatives and distant relatives, teasing apart the difference between genetic variations and environmental factors. Erlich, for example, found that genes account for only 15 percent of the differences in individual life-spans, on average about five years. Speaking about these surprising findings, Erlich says, “I think there is this notion that there is some fountain of youth in our genome, and we just have to find the gene to unlock it. But it doesn’t seem this is the case.” Erlich explains that since 1960, lifespans have increased linearly by about two months every year, despite two World Wars. Despite the many catastrophes of the 20th century, lifespans continued to steadily grow. Erlich says these findings mean that our actions might matter more than our genes. “Smoking for example, determines ten years of our life expectancy, which is twice as much as what our genetics determines.”
While genes seem to have relatively little impact on our life span, genomic data has allowed us to identify risk factors for a numbers of diseases. Using genome-wide association studies (GWAS), it’s possible to link genetic variants in different individuals to particular traits. The more statistically significant the link is, the more the data looks like the skyline of Manhattan. Ten years ago, Erlich says, these Manhattan plots actually looked more like the skyline of Los Angeles. But bigger sample sizes have become easier for researchers to access, thanks to initiatives like the UK Biobank, where an increasing number of genetic risk factors are being identified. Using data from more than 100,000 donors, obtained through the website DNA.land, Erlich has himself been able to discover the genetic bases for several traits in Israeli families.
With the help of civilian genealogy enthusiasts, genomic data is changing not only the landscape of health care, but forensics too. In April, thanks to the website GEDmatch, the FBI was able to link DNA from the unidentified Golden State Killer to a third cousin of the suspect who had voluntarily provided their own DNA to the free online genealogy database. By building a large family tree, and scanning the different branches of the tree until they found a profile that exactly matched what they knew about the serial killer, they were able to track down the suspect, test his DNA, and charge him.
Erlich is impressed by the power of genomics to improve demography, healthcare, and forensics. But he agrees there are many issues that still need to be addressed. For example, since these databases primarily contain people of European descent, non-European populations with certain genetic risk factors are missed, while risk factors identified in these European populations may not have the same implications for other groups. The most obvious reason for this disparity is economics. But many genealogy websites are free, and the price of DNA tests has dropped to as little as $49. Another reason may be access to family records. As Erlich says, “My family died in the Holocaust, so I have no means to go beyond a certain number of generations. It’s all lost.” A lack of record-keeping is also a problem for many populations. There’s also the question of social influence. “If I know someone who is doing genealogy, I’m now more willing to also do it. When you start with one community, it spreads from that community unequally.” Erlich does not have the answers for how to remedy the issue of diversity in databases, but believes that governments, at least in countries equipped with the resources, should take greater responsibility for driving genomic medicine.
Another complex issue is the issue of privacy. When it comes to genetic information, many of us are concerned that employers and insurance companies may use this information unethically. According to the Genetic Information Nondiscrimination Act of 2008 (GINA), employers and insurance companies cannot use our genetic information without our consent. But there are some major loopholes; for example, GINA doesn’t apply to life insurance. There’s also the question of how law enforcement should be allowed to use genetic information. The Golden State Killer case in particular raises many questions about privacy. Interestingly, 60 percent of Americans of European heritage (because they are over-represented in databases) have relinquished genetic information that could be used by law enforcement, and within three years, this number is expected to rise to 99 percent. Erlich says he’s not scared of these techniques being abused. He’s more worried about national security. “I’m more concerned about foreign governments using the same techniques to identify U.S. individuals. Think about CIA operation in some countries. The whole point is that it’s covert—you don’t know the identities of these people. It’s very easy to disguise your face and get a fake passport, but you can’t change your DNA.” At the end of the day, there are no easy answers. “It’s a tricky question of justice, and how to define that,” he says, pointing toward the need to make genetic information part of a public good, rather than be used for monetary gain. But the limits may be hard to find. He says, “I don’t know what’s the right answer.”
About the author:Yewande Pearse was born and bred in North London. She is now a Research Fellow based at LA Biomed, in affiliation with the University of California, Los Angeles (UCLA). She completed her PhD in Neuroscience at the Institute of Psychiatry in 2016, which focused on the potential use of gene therapy for the treatment of Batten disease, a fatal neurological pediatric disease. She is now working on stem cell gene therapy using CRISPR-Cas9 to treat Sanfilippo Syndrome. Before completing her PhD, she worked in the areas of Stroke and Huntington’s disease research and also worked in a care capacity, with people living with Autism, suicidal ideation, dementia and HIV Associated Neurocognitive Disorder.
TEDMED: In your TEDMED 2018 talk, you describe “Uncle Bernie,” the family genealogist who corners family members to get more information. Are you the genealogist in your family? When did your interest in genealogy begin?
Yaniv Erlich: [laughing] I liked genealogy quite a lot,
especially as a child. Like many Israeli teenagers, I conducted my own
genealogy project while I was in seventh grade. It was so enjoyable that I
asked my mother to take me to the Museum of the Jewish People at Beit Hatfutsot; it had one of the only sources for genealogical
information available at the time. I loved how history intersects with family
stories, and the process of finding ancestors felt like detective work. I did
such a good job on this project that it won the title of best genealogy project
of the year at my middle school. Now, since genealogy is my work, it is no
longer a hobby of mine and the family genealogist is my aunt.
The last time I spent time on
the genealogy of my family was after my father passed away 2 years ago. In some
way, I felt that tracing my ancestors connected me to my father and his
childhood–and reviewing the lifecycles of my family relatives gave me some
serenity and comfort that the sorrow that I was experiencing was simply part of
the endless rivers of generations.
TM: What was the catalyst for you to begin
professional research on genetics and family trees?
YE: I was invited to join a commercial genealogy and social networking website by my third cousin, who was
able to trace me and send an invitation email. At that time, I was about to
finish my PhD studies and become more interested in human genetics. When I
started documenting my family tree on the website, I was shocked to discover
that many of my relatives already existed there! This got me thinking — family
trees are one of the most valuable assets in human genetics. Yet, large family
trees are very hard to collect.
A few months later, I started my own independent research group at the Whitehead Institute of MIT. I decided to try to collect all the data from that website as one of the first projects of the lab, so I sent a cold email to the CTO of the website at that time, Amos Elliston. He immediately agreed and instructed me on how to collect the data. Eventually we downloaded 86 million public profiles from the website.
But over time it became a very
long project. We actually spent 8 years from inception to publication.
TM: Did you have any hurdles during the project?
YE: First, we had to substantially enhance and
validate the dataset. The central question was whether we can trust datasets
that were produced by amateur genealogists the same way that we trust family
trees built by scientists. So we subjected the data to a massive number of
tests, such as measuring the error rates of family trees, whether the
individuals in these datasets represented the general population at the time,
and the accuracy of the demographic details inserted by the genealogists.
Second, we had to find the correct questions. In some ways, this dataset was a
blessing and a curse because so many things can be evaluated using such
datasets, and we had to think carefully about the focus of our study. Finally,
we had to develop the computational infrastructure to answer those questions.
Most genetic algorithms were developed to work with family trees with up to
several thousand individuals. We had to develop and improve these algorithms to
work on a scale of tens of millions of people.
TM: A lot of your research focuses on the role of
genetics in longevity. What was the main thing you wanted to understand about
longevity when you began your research?
YE: Longevity is probably the most important trait
because the question: “When am I going to die?” is imminent to us as
individuals and as a society. Surprisingly, not a lot is known about the
genetics of longevity. Some studies in the past suggested that 25% of the
variance in longevity is attributed to genetic differences. However, these
differences were never spotted by any study!
In addition, there is a
long-lasting debate in human genetics regarding the manner in which genetic
variations affect traits. One camp argues that each genetic variant contributes
independently to a trait regardless of the status of other variants. Another
camp claims that the contribution of each variant is a complex function that is
affected by the status of other variants. It is possible to find which camp is
right by inspecting the correlation of the trait in various types of relatives,
from, say, fourth cousins to full siblings. However, until our study, nobody
was able to collect large family trees with enough relatives to robustly
differentiate between the two camps.
Using our data, we inspected
the longevity readout of millions of pairs of relatives. Our analysis shows
that longevity is much less heritable than we thought before and only ~15% of
the variance in the population can be attributed to genetic differences.
Moreover, we showed that at least in the case of longevity, the first camp is
the correct one. The value of each genetic variant is independent of the other
variants. This is actually great news for precision medicine, because if each
variant works independently, it means that it should be easier to find those
longevity variants in the future.
TM: In your TEDMED talk, you spoke about the immense potential of biomedical research and the many insights we can gain from genealogy research. What’s the future of genealogy research?
YE: DNA! We currently see an ongoing revolution in the field. DNA tests enable genealogists to find relatives beyond the information permitted in genealogical records and as a tool to validate these records. In addition, DNA helps to solve cases when records are missing such in the case of adoptees, holocaust survivors, and even child trafficking. Thanks to the genomics revolution DNA tests are now highly affordable, democratizing access by growing segments of the population. A recent Technology Review article estimated that more than 26 million people took such tests and the uptake shows an exponential increase. Some estimate that in a decade most people in Western societies will have access to their DNA information, which means that we may be able to create the world’s family tree based also on DNA matches and not just genealogical information and family stories.