The Human Genome Project was the largest collaborative scientific project in the history of the world. The HeroGene Project has no less a goal than to be the largest collaborative observational health study in history. It may seem an ambitious goal but that’s why we chose it! The need for this follow up to the original HGP cannot be over-stated.
When the Human Genome Project succeeded in mapping the entire human genome more than 16 years ago, genomic research focused on discovering specific genetic mutations that caused diseases. Unfortunately, identifying the gene is only half the battle. For example, even decades after breakthroughs such as finding the mutation that causes the scourge of Huntington’s Disease there are still no cures or even effective treatments2.
The HeroGene Project will help exciting new research at leading Genomic Institutes like Mt. Sinai’s Sema4 and City of Hope’s TGen Institute which are studying the genomes of healthy individuals identified as resilient to severe genetic disorders or displaying other incredible positive attributes that would benefit all of us3.
Our mission at the HeroGene Project is to provide researchers and clinicians the data they need to fundamentally change the way we diagnose, treat, and prevent disease; and to share the progress and results of that work with our Hero’s (that’s you!) so they can be equipped with cutting-edge information to make the best decisions to protect and enhance their own health and the health of future generations.
What was the motivation for creating the HeroGene Project? A number of motivations were involved in creating the HeroGene Project. First was frustration with the ‘Wild West’ environment of commercial genetics increasingly encroaching on legitimate genetic research; the hype and hyperbole around claims by companies rushing to commercialize one-off tests that have not been thoroughly validated or compared to alternative testing methodologies, and the inability for consumers to distinguish low-end testing being sold by consumer sales-driven companies have complicated the task of informing the public about the true potential and actual supportable accomplishments surrounding legitimate research.
Another problem determined needed to be addressed was how patients are asked for their consent to be involved in genetic research. While we may all have signed consent forms in our daily lives without reading or understanding them, for the HeroGene Project this is unacceptable. If you identify as one of 10,000 candidates that might lead us to a single HeroGene discovery, it is important when we reach out to you, that you already fully understand the research you are supporting. We will not be asking for anything invasive… this is not the type of commitment represented by registering as a possible bone-marrow donor for example (also the action of a true Hero in our opinion) but it is still important to know we will have your educated cooperation moving forward to learn more about your phenotype, family history, etc.
How can I become the Hero of my own life?
Wasn’t my DNA, my life’s genetic destiny, determined when I was born?
Most of us are told as children that we can be anything we set our minds to… but even as children we know on some level this is not true. Our physical body (our phenotype, in genomic parlance) is not just about the color of our eyes and hair but also determines facts about our physical stature that dictate most of us are never going to make it to the NBA or NFL, deliver a virtuoso performance at Carnegie Hall, or develop a new mathematical or scientific theorem that fundamentally changes how we understand the world.
When we hear expressions encouraging us to “Be the Best You Can Be” or the Army’s old slogan to “Be All You Can Be” we instinctually place significant restrictions on the scope of what we think is realistic or even possible.
We tend to think that a cosmic roll of the dice determines if we develop Alzheimer’s or Dementia, live to be 100 years old, or even have the mental and physical dexterity to excel at anything from major competitions to our favorite pastimes or passions.
We want the HeroGene project to mean we all start expanding our thinking to consider that it may be realistic for us to manifest more of what represents the very highest potential of what it means to be human… and that we can start taking steps to manifest that potential today.
If you are really interested in a deep dive, this link from the National Institute of Health’s Psychobiology and Molecular Genetics of Resilience will be one of dozens you will find on our site that will allow you to go as deeply into the pure science and exciting research as you want to.
Can I really be a Hero to Humanity?
How do I know if I have the HeroGene? What is a HeroGene anyway??
There is no single HeroGene… except perhaps to a valiant researcher trying to unlock the mystery behind one of the 7,000+ rare diseases responsible for more than half the deaths in Neonatal Intensive Care Units (NICUs). In our book, such researchers are truly valiant in the highest sense of the word; showing heroic determination and courage in the face of overwhelming odds. Their task can involve searching across millions of genotypes looking for individuals who might show a genetic resiliency to the single deadly condition they are working to decipher.
We have to confess that our inspiring term “HeroGene” may not be the expression you will find genetic scientists using. Instead, they might refer to the “genetic resiliency” our valiant researcher is seeking to find. While the term resiliency refers to a familiar concept, in the field of genetics it means that some individuals can be born with a genetic mutation that is known to be the cause of a disease and yet not manifest that disease at all.
The incredible promise of the HeroGene project is to identify not just those of us that may have the HeroGene for rare diseases1 but also find HeroGenes that represent breakthroughs for addressing common chronic diseases like diabetes and depression, longevity, obesity, Alzheimer’s, dementia, mental dexterity, physical strength, and dozens of other manifestations that can make a real difference in how we live out our lives.
There are naturally questions about privacy and security that are absolutely essential to the core mission of the HGP that we address below, but please educate yourself as to what sets this effort apart from the fundamental focus and level of bona-fide science behind HGP vs the popular consumer companies you see on TV pitching DNA as a fun way to trace your family tree.
FREQUENTLY ASKED QUESTIONS
What are the odds of me having a HeroGene? If we are talking about having the HeroGene for one of the childhood diseases currently under study, here are some basic numbers from one of the early resiliency projects undertaken by Mt Sinai in examining almost 600,000 genotypes. Out of every 50,000 participants about 1,250 (2.5%) became candidates for deeper research in order to then find one person demonstrating true resiliency (the HeroGene). So from 589,306 individuals, 13 were identified as carrying a genetic mutation without manifesting the associated disease. Of course we are not only looking for HeroGenes for rare childhood diseases but also life extending and enhancing characteristics that can not only save lives but dramatically improve our daily lives. So while the combined odds are unknowable, they grow greater as more and more types of HeroGenes are discovered. What we do know is that as those HeroGenes are identified, and our Heroes are found, we ALL win.
Why do you need people to join… and WHY ME? Research and clinical breakthroughs require a phenomenal amount of data – genetic, clinical, and environmental — from as wide a variety of people as possible…people of different ages and ethnicities, with different family and personal health histories, from different environments, and with different lifestyles and habits. Each individual that participates—whether they end up possessing a HeroGene or not—is critically important to the overall research. Every genotype that is sequenced and analyzed supports the end goal.
What do I have to do? For now, just let us know we can count on you. Enroll in the HGP and give us the okay to reach out to you, to stay in touch as one our GeneHeros in waiting! If you are willing to go a little deeper right away, go ahead and provide (securely though the highest level of encrypted anonymity) more information about yourself and your health.
And no matter what else you do, please SHARE and help us spread awareness about #theherogeneproject.
What does it cost? There is no cost to participate in the HeroGene Project. However, if you decide (now, or at any point in the future) that you would like to pursue genetic testing for a specific issue, like fertility or prenatal screening, or screening for disposition for certain hereditary cancers, we work with the very best genetic labs in the nation and they do charge for those services. As a supporter of their research efforts, however, we can often secure our Heroes discounted fees for such testing.
What if I’m not sure? That’s okay. Signing up for the HeroGene project only means that you are willing to let us stay in touch with you, and that you would be okay with us reaching out at some point in future if you meet the criteria to have your genome mapped at no cost. There is no obligation, and you can share as little or as much information as you want.
What if I change my mind? No problem. You can opt out at any time.