Daisy Robinton, a postdoctoral researcher at Boston Children’s Hospital, speaks at the Arc Fusion Radical Wellness Summit. (Photo courtesy of Daniel Nystedt)


Our Genetic Legacy

I am not afraid of the prospect of editing human genes. If we do it thoughtfully, it can be a gift to future generations.

Consider, for a moment, how you would feel knowing that you were the product of direct design by your parents. Not just via reproductive choice — they likely chose one another with a vague idea of the possible outcomes their children would embody — but through purposeful design, careful crafting of the traits your genes dictate. It would give a whole new meaning to parental expectations and external pressure. Would you feel gratitude that they chose particular traits valued by our culture? Or resentment that they chose anything at all? Would you feel ownership over your accomplishments in life, or would these accomplishments be — in some larger way — attributable to the genetic design implemented by your parents?

This is an interesting thought experiment, in part because in the not-too-distant future our descendants will likely be having this kind of experience.

Already a growing number of laboratories, institutes, companies, and artists are exploring ways to quantify our bodies, to modify ourselves and our environments to optimize performance and drive particular outcomes. Businesses are offering ways to measure your health across a number of parameters, promising to synthesize the data and provide actionable information to improve health and wellness. As a young woman, as an athlete, the notion of the quantified self and the goal of radical wellness speak to me. I think about extending my window of fertility, relieving the pressure to have kids during this early and bustling phase of my career. I imagine hitting a personal record on my deadlift at the local CrossFit gym when I’m 80. I dream of playing with my great grandchildren at 100 years old.

Who wouldn’t want to tune their body for optimal performance and health? Who doesn’t want to live a better life, for longer? But when it comes to modifying the basic building blocks of our very species — our genes, and inherently our cells and organs — we are taking things a step further. A new and improved human genome will likely change the human image. A 45-year-old man today will not look like a 45-year-old in 2300 AD. Consider photographs from the late 1800s. Many of the men, women and children look different than people of the same age in today’s world. The human image will change, and so will our behaviors, societies, and cultures.

When we alter the fundamental building blocks that make up who we are, we are also changing the nature of our humanity. But we shouldn’t fear it as being unnatural. We should think of it as a gift, a chance to design our legacy.

Humans as GMOs

For the small group of diseases that are the sole result of losing the genetic lottery, this is a revolutionary moment. Just last year, the U.S. Food and Drug Administration approved the first gene therapy to treat an inherited disease — a rare form of retinal dystrophy that leads to vision loss. There are hundreds of gene therapies being developed and tested in clinical trials for patients around the world who have limited alternative options.

But the scope of these genetic changes is small compared to the alterations future humans will likely make. For example, there are rare protective gene variants that have an outsize impact on our health and well-being. Some of these are associated with low risk of cancer (GHR and GH), others facilitate extra strong bones (LRP5), lean muscles (MSTN) and even viral resistance (CCR5 and FUT2). What if we were to “install” genes that offer lifelong protection against infection, Alzheimer’s, and perhaps even aging itself? What if we could prevent the propagation of genetic human diseases in future generations, much like we have largely eradicated many infectious diseases through immunization? When we begin changing the scope of human disease and suffering, we begin changing the human experience. And if we can do that, we might have to ask whether we in fact have a moral imperative to do so.

Many critics of genetic engineering argue that tinkering with genes is “unnatural.” Outspoken critics of genetically modified organisms (GMOs) have been protesting the technology and agricultural products for many years, citing safety concerns or fears that modifying the DNA of an organism renders it somehow less safe to eat or grow. However, we are entering an era where humans are the GMOs, and many people’s health and well-being will depend on the ability to genetically modify their cells. It doesn’t make sense to keep a death-grip on preserving that which seems “natural.” We influence or engineer much of our world to suit our needs, often without any consideration other than that it is more convenient and supports our busy lives. We use hearing aids, prosthetics, and other things that we don’t need to survive but that make our lives better, not to mention tummy tucks and breast implants. We have been doing unnatural things to our bodies for centuries.

I believe we will get staged genetic treatments, much as we receive a barrage of vaccines early in life to train our immune system.

So what if we were to take this perspective, marry it to a more thoughtful intention, and apply it to re-envisioning the future human species? To our children, our children’s children, and their children? We are responsible for their ability to thrive, and we are becoming capable of evolving a more resilient future human. One that will not only be free of hereditary disease, but that will outperform and outlast the humans of today.

We’re not yet ready to edit human embryos or germ line cells whose changes will be passed on through future generations. Indeed, while researchers in China have already attempted genetic modifications in nonviable human embryos, an international committee convened by the U.S. National Academy of Sciences and the National Academy of Medicine concluded that editing the DNA of a human embryo “might be permitted, but only following much more research” on the risks and benefits, and “only for compelling reasons under strict oversight.” Their report called for an ongoing reassessment, including public participation, before any heritable germ line editing is permitted. We are still a ways away from this.

However, in 50 years’ time, if we are not already making genetic changes to the human germ line — especially for universally fatal diseases like Huntington’s disease — I believe we will be undergoing staged genetic treatments, much as we receive a barrage of vaccines early in life to train our immune system. But rather than training our immune system, we will be training our DNA to produce cells, tissues, organs, and ultimately a body that is better equipped to handle the stressors of modern life, and to enable an increased health span to pair with our increasing life span. To avoid the known genetic traps that inevitably lead to disease. Or to enable creation of a sturdier physical body to move through the world with agility, strength, and cognitive function, well into our 70s, 80s and beyond.

As a scientist, the promise of this is incredibly exciting. Not only because of what it allows us to learn, but also how it allows us to grow and evolve. To prepare us for the coming centuries of life on Earth, or perhaps beyond. As a humanist, I want to help create a world where “preventable” describes most diseases. It was only 55 years ago that the first genetic test was administered to infants, facilitating treatment of a disease known as PKU before its effects took hold. What diseases can we treat, cure, or prevent altogether in the next 55 years? In the next 100?

As we begin changing our genes, the fundamental units that make us human, we are disrupting a connection to our past. It might not be possible for people 200 years from now to use DNA to track their ancestry. We might lose what’s known as longitudinal data. But we are gaining a stronger legacy. We are holding the evolution of humans in our hands.

I hope we can bring about change soon enough so that my parents can continue to thrive physically and cognitively for decades to come. So that they can meet their great-grandchildren and hold their legacy in their arms. This is our future. We must push forward; thoughtfully, carefully, but forward nonetheless, to give the inheritors of our legacy what we wish for ourselves: a greater health span. A greater life span. A better life.

This article is adapted from a talk that Daisy Robinton gave at the Arc Fusion Radical Wellness Summit in Watertown, Massachusetts, on May 3, 2018.

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