Genomics Future - Genomic Messages: How the Evolving Science of Genetics Affects Our Health, Families, and Future - George Annas, Sherman Elias 

Genomic Messages: How the Evolving Science of Genetics Affects Our Health, Families, and Future - George Annas, Sherman Elias (2015)

Chapter 10. Genomics Future

Do not try to live forever. You will not succeed.

—George Bernard Shaw, preface to
The Doctor’s Dilemma (1911)

We have been primarily concerned with the ways in which our evolving uses of genomics in clinical medicine might reshape the practice of medicine in America. In our final chapter, we examine genomics future, and broaden our horizons to consider how the evolving genomics could affect both the broader society and even the world. This is speculative genomics. We ask you to think about the novel ideas of contemporary genomic researchers. Are they reasonable predictions of the future, or do you find that they are more like science fiction scenarios, created as precautionary tales to discourage experiments that might endanger our future as a species? We will also refer to science fiction to inform our discussion. As prominent genomics and synthetic biology researcher Craig Venter has observed, many of the greatest ideas in genomics “have been anticipated by myth, legend, and, of course, science fiction.”

Our century can be viewed as one that attempts to redeem science from the destruction of physics (gray science)—as displayed in the atomic bomb and the doctrine of mutually assured destruction (MAD)—by redesigning nature through genomics (green science) to make life better for humans. For good or evil, as scientist and futurist Freeman Dyson has put it, “The 20th century was the century of physics and the 21st century will be the century of biology.”

Most genomic futures feature improvements in human life and health. But at least some experiments along the way are dangerous. We may, for example, use genomics to try to change the nature of human beings—changes that could simultaneously cause us to change our notions of human rights and even of crimes against humanity.

There is already a brief history of promising but potentially dangerous genomic experiments. In the early 1970s, when the technique of recombining genetic sequences (recombinant DNA) was just being introduced, the primary experimental bacteria was E. coli, a common inhabitant of the human gut. Leading scientists met at Asilomar, a conference site in California, and agreed that no further recombinant DNA experiments using E. coli should be conducted until the safety of the procedure could be assured. Safety was ultimately achieved by restricting recombinant DNA experiments to laboratories that had elaborate methods to contain any dangerous bacteria that might be developed. In addition, a biological containment mechanism was added: the creation of a form of E. coli incapable of survival outside the laboratory. No similar moratoria were called by scientists until 2013, when a temporary moratorium (we think it should have been permanent) was called on experiments designed to see if a potentially dangerous H5N1 flu could be modified to make it communicable in mammals (ferrets). Both these experiments were designed to learn more about basic biology.

A set of proposed future genomic experiments is designed to go beyond bacteria and mammals, to use genomics to make a “better” human by modifying either the genes of an embryo or the brains or bodies of adults. In this chapter we examine some of the most prominent of these proposals—from both the scientific literature and contemporary science fiction. These include the merging of humans and machines to create immortals, the manufacture of “mirror humans” who are immune to disease, and the creation of posthumans or transhumans. How can we, as citizens of our global society, take part in defining the goals and methods of genomic research?

Life, Death, and Immortality

We all have thoughts about how the world will end, even though few of us obsess over them. Some favorites of ours include our sun expanding to incinerate us, climate change making Earth uninhabitable, a meteor striking Earth and destroying it, a plague of zombies, or a biological plague—like the flu or even Ebola—that destroys all human life. The role of genomics in these possible futures is most prominent in a plague scenario. In her wonderfully destructive apocalyptic trilogy (MaddAddam, Oryx and Crake, and The Year of the Flood), Margaret Atwood invents a world that has reverted (or evolved) into another Eden. All but a handful of humans have been destroyed by a biotoxin created by a disturbed young genetic engineer, Crake. A new species of humans, who will inherit what remains of Earth, the Crakers, have had all their destructive tendencies genetically engineered out, including racism, hierarchical thinking, territoriality, and sexual desire. They are “perfectly adjusted to their environment.”

We’ll come back to the Crakers and their new Eden. We begin with them to emphasize that at the margin it is often difficult to tell the difference between reasonable scientific speculation and science fiction. Moreover, in examining the speculations of some contemporary genomic scientists, we will not only discover where they think we might be going but will also be able to explore the ethical and legal implications of their visions. Atwood is not sanguine about the ability of scientists and corporate leaders to have insight into the implications of their work for humanity. In her words, “The people in the chaos cannot learn. They cannot understand what they are doing to the sea and the sky and the plants and the animals. They cannot understand that they are killing them, and that they will end by killing themselves.”

Atwood’s envisioned future may be (let’s hope) overly pessimistic. But maybe not. Some scientists, acknowledging the vast destruction humans have already inflicted on the planet, have called for a “resurrection” of extinct species using genomics and cloning. Their goal is to transform the Jurassic Park of science fiction into science reality by using cloning technology to bring back extinct species such as the carrier pigeon and the woolly mammoth. The idea, variously referred to as the “Lazarus Project,” “revival biology,” and “the de-extinction movement,” does seem more science fantasy than science fact. Nonetheless, serious genomic scientists, including Harvard Medical School’s George Church, have endorsed it. At its best, Ryan Phelan of the “Revive & Restore” project argues that attempting to bring back extinct animals is a compelling way to call the world’s attention to the threat that more animal species will soon die out. On the other hand, if the public believes that whenever a species becomes extinct, genomic science can bring it back through cloning, the urgency of species death may dissipate. Two other possibilities are that, like Crake, genomic engineers may wish not only to revive but to improve the now extinct species. Crake, for example, “improved” pigs (which he called Pigoons) by adding human brain tissue and organs suitable for human transplant.

Church has thought about how the woolly mammoth project might proceed and has described it in Jurassic Park terms. The process of using historical DNA and combining it with the DNA of an existing creature to try to recreate the historical creature is best illustrated in a cartoon in the middle of the movie Jurassic Park which explains how DNA can be taken from a modern frog and used to replace missing DNA from a long-dead dinosaur. Church would not follow this procedure, but instead he says he would begin with the genome of an elephant and attempt to modify it so the next-generation elephant would grow more hair. This is not a resurrection project but rather a genetic modification project. Craig Venter seems correct in dismissing the entire enterprise of reviving extinct species as “fanciful.” This is because only a small number of DNA segments from the woolly mammoth have survived and they are degraded and highly fragmented.

The woolly mammoth “resurrection” project was left to perhaps our most famous living artist, Damien Hirst. Hirst procured the skeleton of a woolly mammoth, deconstructed it, gilded its bones with gold leaf, put it back together again, and encased it in a display box (figure 10.1). Of course, his creature is not alive. Hirst was not imitating nature but rather commenting on nature in a way that could tell us more about ourselves than science. Hirst observed that the mammoth “came from a time and place that we cannot ever fully understand [and] despite its scientific reality has attained an almost mythical status.” Gold leaf was added to “combine science, history, and legend.” Hirst concluded, “I’ve pitched everything I can against death to create something more hopeful.” The woolly mammoth is “Gone but not Forgotten.”

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10.1  Damien Hirst’s “Gone but Not Forgotten” (2014). Dave Bennett, “amfAR’s 21st Cinema Against AIDS Gala Presented by Worldview, Bold Films, and BVLGARI – After Party,” WireImage, May 22, 2014.

Hirst won the race to resurrect the woolly mammoth. No matter. Church has more ideas for using genomics to resurrect the past. Church has said, for example, that he thinks we will witness the birth of a Neanderthal baby in his lifetime. He has also speculated that cloning many Neanderthals would be good for human diversity and could even save the human race from extinction. We should not try to resurrect just a single Neanderthal, but should, he said, “create a cohort . . . [by cloning, who could] maybe create a new neo-Neanderthal culture and become a political force.” This outrageous proposal caused little comment.

Public controversy followed instead from one sentence in Church’s book Regenesis: “Supposing, then, that we have recreated the physical genome of Neanderthal man in a stem cell, the next step would be to place it inside a human (or chimpanzee) embryo, and then implant that cell into the uterus of an extraordinarily adventurous human female—or alternatively into the uterus of a chimpanzee.” Church did concede that this could only happen “if human cloning becomes safe and is widely used.” Press outlets treated an interview about his book as a serious attempt to find the “adventurous female.” Headlines included, “Harvard Professor Seeks Mother for Cloned Cave Baby.” Church credibly denied planning to do any such thing, but he did announce a few days after the interview that “hundreds and hundreds” of women “have volunteered to be surrogates [mothers] for the Neanderthal child.”

To the best of our knowledge, Church is the first geneticist to suggest that we use genomics to reverse-engineer humans—to go back in time to resurrect our ancient and extinct human relatives, like Neanderthal man. London’s Daily Mail put Church’s hypothetical project in context: “The phrase ‘Frankenstein science’ has never been so apt.” Pressed to explain his enthusiasm for this type of genomics experiment, Church conceded that we may not actually want to recreate the entire Neanderthal, but just introduce Neanderthal genes into the DNA of modern Homo sapiens—the DNA that codes for brain or “neuronal pathways, skull size, a few key things.” He continued, “That could give us what we want in terms of neural diversity. I doubt that we are going to particularly care about their facial morphology.”

Picking genes to create a “better baby” is the dream of many a genetic engineer. It still remains in the realm of science fiction. Will it ever become reality? And what characteristics would make a “better baby”? George Church again helps us begin our exploration. As he told Der Spiegel, “The de-extinction of a Neanderthal would require human cloning.” The interviewer responded that human cloning “is banned.” Church replied (correctly), “That may be true in Germany, but it’s not banned all over the world. And laws can change.”

Whether genomic scientists ever succeed in producing a human clone, the delayed genetic twin of an existing human (more than fifteen years after the birth of Dolly the sheep, it has yet to happen), we can learn a lot from the international movement to ban human cloning. And the most important things will be about life, not science, about values, not technique. The reason political leaders around the world called for a ban on applying the Dolly-the-sheep cloning technique to humans, if not always well articulated, is that replication of a human by cloning could radically alter the very definition of a human being by producing the world’s first and only human with a single genetic parent. Cloning a human can also be viewed as uniquely disturbing because it is the manufacture of a person made to order, it represents the potential loss of individuality, and it symbolizes the scientist’s unrestrained quest for mastery over nature for the sake of knowledge, power, and possibly profit.

Fiction has been far more influential than science writing in producing society’s mixture of fascination and horror regarding cloning, as exemplified by films such as Blade Runner, Sleeper, and Jurassic Park. Science fiction suggests that governments, corporations, wealthy individuals, and rogue scientists have multiple motives to clone. A type of hypercloning was, for example, the basis for governing in Aldous Huxley’s Brave New World (1932). The key to social control in Huxley’s society was the “Bokanovsky Process,” in which a single embryo is stimulated to divide into ninety-six identical copies. These ninety-six embryos were then artificially gestated together under identical conditions designed to produce four basic classes of workers: Gammas, Deltas, Epsilons, and Alphas. Specific “batches” were conditioned to perform socially useful tasks and to love performing them. Their happiness with their lot in life was reinforced chemically: the drug soma kept them contented. Huxley’s combination of genetic engineering of bodies and chemical engineering of minds seems as unlikely today as it did seventy-five years ago. That is because there are many more efficient ways of creating large numbers of troops or terrorists. Physical and psychological conditioning can turn teenagers into soldiers in a matter of months, rather than waiting some eighteen to twenty years for clones to grow up and be trained. Cloning has no real military or paramilitary uses. The profit motive is much more powerful today. As the author of Jurassic Park, Michael Crichton, put it: “The commercialization of molecular biology is the most stunning ethical event in the history of science.” Science writer Barry Werth has also noted that while science needs “facts, data, evidence, rigor,” business can be founded on profile building using “blue smoke and mirrors.”

Science fiction can help us identify the major ethical and social policy issues raised by cloning a human, but it cannot tell us how to proceed. There are four basic regulatory models to choose from: the market, professional standards, government regulation, or an outright ban. In the medical care and medical research context, we have consistently urged medical specialty organizations to set and follow practice and ethics standards. Unfortunately, to date the relevant professional medical and genomics associations have not been able to move beyond Crichton’s commercialized market-consumer model. As we noted more than two decades ago, the existing practice in reproductive genetics is to provide consumer-patients with whatever they want (and can pay for), rather than to develop a professional model that sets meaningful practice and ethics standards or takes seriously the welfare of resulting children. If anything has changed over the past two decades, it is probably the emergence of the market as an even stronger force than professional self-identity in shaping professional standards, as well as the simultaneous commodification of sperm, eggs, embryos, and pregnancy—and arguably, human children.

A treaty to ban human cloning was widely debated but ultimately rejected at the United Nations. A substitute, nonbinding, “Declaration on Human Cloning” was adopted by the UN General Assembly in 2005. The declaration calls on all member states to prohibit cloning to make a baby and prohibit genetic engineering (provisions we favor). But it goes further, prohibiting human cloning to make medicine—a provision insisted on by the United States but one that we (and thirty-four countries that voted against the declaration) think is misguided and unnecessarily restricts important scientific research. The absence of a treaty means that the world reverted to its default mode, which we have termed “ethical arbitrage.” This means simply that researchers and corporations are free to take their genomic experiments, including cloning experiments, to the country with the most lax regulatory scheme. The cloning treaty failed primarily because the United States insisted that any cloning treaty reflect its position that all human cloning, including using embryos to make stem cells, should be outlawed. The U.S. debate on cloning was significantly deformed by its relationship to the abortion debate and the religious beliefs of many that a human embryo should be treated like a baby from the moment of its creation. It was this belief that led President George W. Bush to limit federal funding for stem cell research using cells derived from human embryos to those that had been created before August 9, 2001, the day he made his funding decision. President Obama continued this funding ban. That means that virtually all stem cell research since 2001 has been privately funded or funded by individual states, and this has fostered a “Wild West” mentality in which experiments are driven more by hope of profits than pursuit of science. As we wrote in Nature during the 2004 presidential campaign, it also led the President’s Council on Bioethics to concentrate on articulating an ethical justification for the funding ban, which it was unable to do.

There were other objections to the cloning treaty. One important one was the belief held by proponents of human modification that neither cloning nor germline modifications should be considered so inherently dangerous that they should be outlawed. George had suggested that cloning and germline modifications should be thought of as “species-altering procedures.” The objection to this category of procedures was that it is too vague and too inclusive. This critique has some merit, and it is reasonable to think that only species-altering procedures that are “species endangering” should be outlawed. That is because it may be possible to genetically alter the human species, or members of the human species, in ways that do not put the species itself at substantial risk. For example, changing the skin color of all humans to green would alter the species but would not put humans at risk of either extinction or transformation into another species.

Species-Endangering Experiments

Technology has made it possible for some humans to put all humans at risk of extinction. Kurt Vonnegut, a survivor of the firebombing of Dresden, provides a good starting point for understanding species-endangering experiments in his profound 1963 novel Cat’s Cradle. Cat’s Cradle is narrated by Jonah, who is writing his own book about what prominent Americans were doing on the day the atomic bomb, a product of gray technology, was dropped on Hiroshima. Collecting information for his book, he interviews Dr. Breed, a scientist and associate of one of the inventors of the atomic bomb (Dr. Hoenikker), who insists that he only does “pure science,” not military science. He concedes he was once asked by a Marines general to make something that would eliminate mud, because the Marines were sick of fighting in mud. Breed never developed this product. Hoenikker did invent—but never experimented with—an investigational mud-destroying product, called “ice-nine.” When ice-nine is ultimately field tested, it crystallizes not just the water in mud around it. In a chain reaction, it crystallizes all water, ending life on earth.

The probability of actually creating a new weapon or life form that would threaten the very existence of the human species is low, but it seems reasonable to conclude any quantifiable probability of human extinction must be taken seriously. For example, if cloning is a necessary precondition to genetically modifying humans in a way that endangers the future of the species as species, the international community could reasonably decide to include it in the species-endangering category. On the other hand, using cloning (the creation of human embryos by somatic cell nuclear transfer for use in research) to make medicine (by harvesting stem cells from them) would fit into neither category, since this type of cloning neither alters nor endangers the human species. Quite the opposite: it offers humanity the prospect of medical benefit.

As Vonnegut suggests in Cat’s Cradle, the most familiar global annihilation scenario is not a genetically driven experiment at all, but a large-scale nuclear exchange. Other candidates for species-endangering experiments include the introduction of inheritable genetic alterations, the development of human-machine cyborgs, the direct creation of new human pathogens, the enhancement of existing human pathogens, the weaponization of an untreatable biological agent or toxin, and the creation of new weather patterns. More specific illustrations include the development of a new and more lethal strain of smallpox as a bioweapon and the use of inheritable genetic alterations to create “superior” humans. The subject matter is technologically driven and recognizes that new technologies have made it possible for some humans to put all humans, the entire species, at credible risk of extinction. Of course, only prevention matters in this extreme sphere: an extinct or radically altered species cannot prosecute its destroyer, or even convene a truth and reconciliation panel. As Margaret Atwood’s end-of-the-world trilogy underlines, only unsuccessful attempts to destroy the human species are prosecutable or forgivable.

As these examples suggest, the human species is most likely to be endangered in two ways. The first is through an existing or new weapon of mass destruction—biological, nuclear, or chemical—that could destroy all or most members of the human species. Even a one-in-a-million chance that the human species would be destroyed is reason to prohibit scientists from developing a weapon or a pathogen (it may be a chance worth taking to develop a lifesaving drug, however, or a cure for cancer). Use of these dangerous military and technological creations can be seen as a subset of genocide, and like genocide, the most important strategy is to prevent potentially genocidal weapons from being developed in the first place. Once ice-nine was developed, its use was inevitable.

The second species-endangering category, and the one we focus on because it directly involves genomics, is a modification or alteration in some members of the human species that could lead to the demise of the species qua species by direct replacement with a new species, or by initiating what George has termed “genetic genocide” (in which the modified humans destroy the unmodified humans, seeing them as subhuman, or the unmodified humans destroy the modified humans, seeing them as a threat to their continued existence). But is preserving the human species such an important goal that we should forgo possible improvements in the species through genomics? Francis Fukuyama probably articulated this concern in the clearest language when he noted, “It is impossible to talk about human rights—and therefore justice, politics, and morality more generally—without having some concept of what human beings actually are like as a species.”

Posthumans and Transhumans

Jaron Lanier, who has been described as a “megawizard in futurist circles,” is skeptical of our ability to predict the future (on Earth, let alone in the universe) but nonetheless takes the posthuman movement seriously. In Who Owns the Future? he quotes from notes taken at the Singularity University (located next to Google in Mountain View, California): “Your mind is software. Program it. Your body is a shell. Change it. Death is a disease. Cure it. Extinction is approaching. Fight it.” Lanier’s own bottom line about his fellow futurists: “What most outsiders have failed to grasp is that the rise of power of ‘net based monopolies’ [like Google and Facebook] coincides with the new sort of religion based on becoming immortal.”

Posthumanists despair of our species entirely, looking forward enthusiastically to a future in which we will happily leave Homo sapiens (and our genes) behind and merge with machines (this merger—of Homo sapiens with machines—is sometimes referred to as the “Singularity”) to become immortal. At this point, we will simply leave our current human species behind; Homo sapiens will look like what a species of monkeys looks like to us today. In one vision, we will exist only as digital information. In another it is when humans and computers merge to create a new life form.

In a debate with a posthuman enthusiast at Yale a few years ago, George irritated his opponent so much that the opponent declared, “I don’t care about the human species.” For us (and I would suspect an overwhelming majority of the members of the human species), that’s the problem, or at least a problem with posthumanism’s prophets. It’s one thing for our species to disappear or merge with machines as an inevitability; it’s quite another for some humans (or a single human, like Crake) to make this choice for all of us.

It is not suicide, but immortality that is on the minds of most posthumanists. This seems to be the dream of Google—whether achieved by genetics or big data. Its project was announced in a cover article in Time magazine: “Can Google Solve Death?” The authors of the article (and likely many Americans) seem to believe that if anyone could solve death, Google could. The basis for their belief is digitalization: “Medicine is well on its way to becoming an information science” (true) and “doctors and researchers are now able to harvest and mine massive quantities of data from patients” (not yet). Their bottom line: “Google is very, very good with large data sets.” Probably true but unlikely to have anything to do directly with immortality. But for us, and we’re sure for readers of chapter 8 on cancer, it was Google cofounder Larry Page who articulated an otherworldly view of the capacity of big data to extend our lives. He said he had just learned that even if we could prevent or cure all cancers, we would only be able to add about three years to average life expectancy. From that he concluded that “solving cancer [is not] this huge thing that’ll totally change the world.” He continued, “There are many, many tragic cases of cancer, and it’s very, very sad, but in the aggregate, it’s not as big an advance as you might think” (emphasis added).

We take a different view: we think curing cancer would be a giant deal to billions of people around the world (especially those who will develop and die of cancer), and although immortality is impossible (George Bernard Shaw was right when he advised, “Do not try to live forever. You will not succeed”), there is no hope of major life extension without solving the cancer problem. As “individualistic” Americans we are much more interested what happens to us that in what happens to the “average person.” Within a year of the Google death cover, for example, Time ran a special health double issue with a baby on the cover with the caption, “This baby could live to be 142 years old.” You should ask yourself whether you find that prospect comforting or horrific.

Damien Hirst’s diamond-encrusted skull strikes us as a fitting symbol both of Google’s project and America’s inability to come to terms with human mortality (figure 10.2). Hirst titled the skull “For the love of God.” It is based on the reaction of his mother to it (“For the love of God Damien, what will you do next?”) The American answer: We will conquer death (or decorate our lifeless skulls to symbolize our striving for immortality).

A year after it announced plans to challenge mortality, Google announced another of its “moonshot” projects, a study of what goes on inside the human body, called Baseline Study. As reported in the Wall Street Journal, the study will collect not only the entire genome of thousands of volunteers but also their medical histories, information on how they metabolize food, nutrients, and drugs, their heart rate, respiration, and the content and actions of their microbiomes, and much more. They will also be monitored by Google-invented wearable devices to collect additional information. The goal is to identify new biomarkers that can be used to predict (and hopefully cure) diseases before they start. This project implicates all of the privacy and informed consent issues we highlighted in chapter 9, and not just in relationship to genomics.

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10.2  Damien Hirst’s “For the Love of God” (2007). Wikimedia Images, September 15, 2007.

In the Baseline Study project, Google seems to be taking data collection on humans to its logical extreme, viewing the human body as simply the site of a massive amount of data—data that can be collected and analyzed to explain life itself. Craig Venter has analogously suggested that at some point it will be possible to digitalize a life form, send the electronic version of the life form to another planet, and reconstruct the life form from its data. The model for this concept is Star Trek’s transporter. Of course, reconstructing such a complex life form as a human may never be possible. But constructing microbes from a genomic blueprint may be. As Venter himself suggests, “It doesn’t require a great leap to think that, if Martian microbes are DNA-based, and if we can obtain genome sequences from microbes on Mars and beam them back to Earth, that we should be able to reconstruct the genome.”

Venter goes on to suggest that this “synthetic version of the Martian genome” could be used to “re-create Martian life for detailed study” without having to confront the logistical nightmare of actually going to Mars and bringing back a biological sample. Nor is Venter’s vision limited to our solar system: “If this process can work from Mars, then we will have a new means of exploring the universe and the hundreds of thousands of Earths and Super-Earths being discovered by the Kepler space observatory.” We could, for example, send our own DNA instruction book into the universe with the hope that another civilization might be advanced enough to know how to re-create us from our genome.

The posthuman movement is also being taken seriously in contemporary fiction. Dan Brown’s bestselling Inferno, for example, has a transhumanist genetic engineer, Bertrand Zobrist, as its somewhat sympathetic villain. Zobrist has developed a powerful genetic weapon, an airborne vector virus capable of modifying human DNA to induce sterility. His goal is to use the virus to make a third of humans on Earth sterile and prevent humans from overbreeding to an unsustainable population. The discussion among the characters as to whether countergenetic engineering techniques should be tried to reverse the effects of the sterility virus includes points for and against genetic engineering itself. Both arguments are most effectively presented by Sienna, a disciple of Zobrist. First, Sienna presents the argument against genetic engineering: “The human genome is an extremely delicate structure . . . a house of cards. The more adjustments we make, the greater the chances we mistakenly alter the wrong card and bring the entire thing crashing down. . . . Even if you designed something you thought might work, trying it would involve reinfecting the entire population with something new. . . . Zobrist’s actions were reckless and extremely dangerous.”

Sienna also makes the argument in favor of inducing massive genetic alterations: “The transhumanist movement is about to explode from the shadows. One of its fundamental tenets is that we as humans have a moral obligation to participate in our evolutionary process . . . to use our technologies to advance the species, to create better humans—healthier, stronger, with higher-functioning brains. . . . [G]enetic engineering is just another step in a long line of human advances.”

Futurist Ray Kurzweil, who joined Google in 2013 to work on artificial intelligence, believes he will live long enough to live forever. He thinks the date for the Singularity is 2029, the year he believes advances in genomics and nanotechnology will be occurring so fast, under the law of accelerating returns, that we will merge with our machines and become immortal. Kurzweil envisions the creation of a digitalized brain (software) that we can copy and download into an infinite variety of bodies (hardware). To those who worry that supercomputers will replace and destroy humanity, Kurzweil’s response is that attempted regulation of this technology would require a totalitarian-type government that would simply drive technological innovation underground, where it would be even more dangerous. Self-regulation (the market) is proclaimed as the answer. While all techno-optimists resist government oversight, some also reject the Kurzweil human-machine merger model of the future. Genetic optimist Juan Enriquez, for example, sees the real merger as genomic: a merger of gene therapy, epigenetics, and proteomics that will enable humans to chart their own evolution to become better humans. In his words, “Forget the singularity—biology will trump technology.”

Consent is a necessary precondition for ethical human experimentation, but it is not a sufficient justification: more than consent is at issue in species-endangering experiments, including experiments to produce the posthuman. An individual may provide consent to be a subject in an experiment, and in some cases, parents may consent on behalf of their children. But no one has the right or moral authority to consent to an experiment that puts the entire human species at risk. That is because the harm risked in a species-endangering experiment is not to the individual (who may or may not be harmed, and could even be benefited) but potentially to the entire species. If the risk of radically altering or destroying the human species is too high (more than 1 percent?), then consent is not relevant. Similarly, consent of the victims is no defense for committing crimes against humanity, such as slavery or torture.

George Church would, for example, need the consent of his hypothetical “extremely adventurous female” to clone his Neanderthal as a necessary precondition of the experiment. But her consent, while necessary, would not be sufficient. We would also need some sort of “best interests” (imputed) consent from the Neanderthal. But most important, as Church himself concedes, the final arbiter of whether the experiment could be done should be “society.” Church doesn’t say how society could make the decision. We suggest that something like a species-wide institutional review board, or IRB, should be established on the global level, with authority to approve species-endangering experiments (where the actual risk of endangerment is very low) on behalf of the inhabitants of Earth. Yes, we realize this sounds like science fiction too.

In 2015 two groups independently called for a moratorium on using a new and powerful genome editing technology called CRISPR-Cas9 on human embryos (as well as sperm and eggs) to attempt to make a better baby. One group, led by the president of a biotech company, Edward Lanphier, simply wanted to call a halt to any research on modifying human embryos which they saw as both risky and nontherapeutic. In Lanphier’s words, “We are humans, not transgenic rats.” The other group wanted to continue research on the editing technology to address the safety issues and was not ready to condemn using the procedure to try to create a better baby. Their conclusion was that what is needed now is an “open discussion of the merits and risks of human genome modification by a broad cohort of scientists, clinicians, social scientists, the general public, and relevant public entities and interest groups.”

Another contemporary real-world example that illustrates the potential utility of a public review board involves studies designed to create a new and more dangerous version of H5N1 (bird flu) influenza virus that can be efficiently transmissible between mammals. The laboratory animal of choice for this experiment was the ferret. Publication of the work was controversial, many worrying that the modified H5N1 influenza could be a blueprint for the creation of a bioterror weapon. Others argued that the work was too dangerous to be done in the first place, a view we share. This view gained credence when in 2014 it was disclosed that the NIH had discovered that smallpox samples which should have been destroyed decades ago had been left in a storage room unprotected, and the CDC had negligently let loose live anthrax samples that it believed it had killed, as well as a particularly dangerous strain of flu. All the director of the CDC could say was that “the culture of safety needs to improve.” That’s an understatement. Bioterrorism expert Thomas Inglesby noted that if these accidents were taking place in the United States, they were likely happening around the world. In dangerous research, he argued, “everyone has to start with the assumption that we have human systems that are fallible. There’s no such thing as perfect systems.”

We think the lack of a global review mechanism to examine species-endangering experiments means that no such experiments can lawfully or ethically be conducted today. This says nothing, however, about the future in which such a representative and accountable body, which could be well short of world government, could exist. A similar suggestion was made by astronomer Martin Rees in discussing the chances that CERN’s (European Organization for Nuclear Research) Large Hadron Collider, the world’s largest and most powerful particle accelerator, could, when in operation, create a small black hole that would destroy the planet (the odds were vanishingly low, and thankfully, it didn’t). In his words, “No decision to go ahead with an experiment with a conceivable ‘Doomsday downside’ should be made unless the general public (or a representative group of them) is satisfied that the risk is below what they collectively regard as an acceptable threshold.”

Fact or Fantasy?

Martin Rees adopts Vonnegut’s ice-nine scenario as one possible outcome of the supercollider experiments. Scientists’ consistent use of science fiction to illustrate potential risks of their own experiments has failed to persuade many nonscientists that fiction can be useful in making real-world science decisions. For example, human enhancement proponent Timothy McConnell has argued that our proposal to outlaw species-endangering experiments, at least until an accountable global review body can be formed, seems to be motivated by “fear” of genetic enhancement stoked by reading science fiction. He specifically mentions Frankenstein, Dr. Jekyll and Mr. Hyde, and The Time Machine. McConnell rejects the likelihood that genetically enhanced humans will kill the unenhanced, terming it a conclusion that demands justification. We, on the other hand, think it is a risk that only the species can authorize.

Genetics ethicist Eric Juengst also believes that the real issue is discrimination, noting that George himself had summed up this species-distinction problem with a new term, genism. We have two responses: human history provides sufficient justification for assuming that the powerful will dominate and subjugate the weak, even with strong antidiscrimination laws; and the real question is the burden of proof in this policy debate. Should the opponents of species-endangering experiments have to demonstrate that it is more likely than not to result in human extinction, or should (as we think) the precautionary principle be used to put the burden of proof on would-be experimenters to demonstrate (to our global review body) that their experiment will not result in species extinction?

Human extinction could, of course, be caused by outside forces we cannot control (for instance, a large meteor hitting earth, climate change, or even an alien attack). Of greater concern to us are the actions we can control or prevent. As we suggested at the beginning of this chapter, Margaret Atwood provides a relevant cautionary tale in Oryx and Crake. Crake, a gifted but disturbed young genetic engineer, graduates from creating genetically fused novel animals to creating a happiness pill, “BlyssPluss” (a pill not too different from Huxley’s soma), finally creating a whole new subspecies of humans, the Crakers. The BlyssPluss pill is designed to protect humans against all sexually transmitted diseases, provide unlimited libido, and prolong youth. It becomes so popular that Crake can (and does) unleash a worldwide lethal pandemic by adding a toxin to it (“It was a rogue hemorrhagic [amazingly quickly causing bleeding from eyes and skin, convulsions, and death]. . . . [T]he bug appeared to be airborne.”). As for Crake himself, except for his new humans, the “fear, the suffering, and the wholesale death” of the rest of humanity, the old humans, did not touch him. “Crake used to say that Homo sapiens was not hard-wired to individuate other people in numbers above two hundred, the size of the primal tribe.”

Atwood’s musings (as articulated by Crake) are not that different from the musings of geneticist George Church in Regenesis. As Atwood notes in her acknowledgments in MaddAddam, hers is a work of fiction, but she “does not include any technologies or biobeings that do not already exist, are not under construction, or are not possible in theory.” When George Church decided to take his own ideas about re-engineering the human species to the public, he chose as his co-author Ed Regis, the author of a book on “science slightly over the edge,” The Great Mambo Chicken and the Transhuman Condition.

Church’s concept of transhumanism is to create what he calls “mirror humans.” These are transhumans designed by “changing the handedness of an entire organism and all of its components, so that you have a mirror image of everything from the macro level all the way down to the atomic level.” Church’s transhumans would look just like current humans but “would be radically different in terms of resistance to natural viruses and other pathogens.” It would “almost be as if two separate species of humans existed simultaneously,” although “mirror humans should have an unusual smell” and could not sexually reproduce with existing humans. Church agrees that his experiment to produce mirror humans would be risky. Interaction of mirror molecules with existing molecules is “unpredictable,” and “careful screening of mirror molecules by computational methods or by actual experiments will be necessary to ensure safety.” Church seems to think regulation of his experiments is not necessary or even possible because the science is unstoppable. Like others before him, he seems to believe that the only thing scientists can’t control is themselves: “Regulations . . . can be circumvented by anyone who is sufficiently determined to evade them.”

Church explains his ultimate goal in the most ambitious language of any we have seen: “The [human] genome should become not just the genome of one lonely being or one planet. It should become the genome of the Universe.” This vision mirrors that of physicist Frank Tipler, who sees humanity reaching the “Omega Point”: the “ultimate state of the universe” where life has “gone everywhere” and “becomes omnipotent . . . and omnipresent.” This vision becomes reality only if humans have “evolved” into nanoparticles capable of travel at near light speed—or, in Craig Venter’s vision, we roam the universe as electronic data in search of a civilization capable of reconstructing our bodies and brains from our genomic blueprints.

It is, of course, much easier to make pronouncements about what should not be done than about what we should do. It is, for example, easy to say that we should not destroy our planet or our species by genetically re-engineering ourselves or releasing genetically modified biotoxins into the environment. The harder question is what we should do to try to prevent other humans from doing either of these things, or even whether we should worry about these possible futures at all. We think it unexceptional to suggest that you should join with those who want to use genomics for the good of humanity and our health, and try to prevent genomics from being used for evil. We think, for example, that it is reasonable to promote the use of cloning technology for new medicines, including regenerative medicine, while simultaneously opposing the use of cloning to make babies who are genetic duplicates of an existing human or the use of genetic engineering techniques to make a “better” baby. We think it is also reasonable to oppose resurrection experiments to bring back the woolly mammoth and carrier pigeons as simply unscientific and a waste of time and resources. Likewise, the proposal to resurrect Neanderthal man seems completely misplaced and even dehumanizing. Likewise, we think it is reasonable to oppose the Singularity project, although you may think, with Kurzweil, that it is inevitable with or without our help.

The most difficult genomic issue is trying to genetically modify a human embryo to create a better baby. It is a truism that evolution has in its own slow way created better babies over the centuries. No one would seriously argue (at least we wouldn’t) that humans have reached their limit and cannot be improved. On the other hand, it is certainly not clear that we have the knowledge or ability to determine what will be “better” for the next generation—at least beyond a few immunities, like immunity to cancer. Even here, however, there may be unknown side effects, such as early mental illness, that would make cancer immunity not worth having.

Concluding Thoughts

We decided to write this book because we believed that the evolving science of genomics has the potential to radically change both how we think about ourselves, and the type of health care system we will have in the near future. This change will include incorporating electronic health records complete with our sequenced genomes, new genomic analytics that can help predict future diseases, new ways to treat and possibly cure complex diseases, including cancer and diabetes, and new ways to determine the effect various drugs (and foods) are likely to have on you based on your genome. We think that the messages conveyed by our genomes are so massive in quantity, and so potentially beneficial in quality that they will cause physicians and others to want to modify or eliminate traditional medical ethics doctrines of informed consent and privacy. We think this would be a mistake, making medicine both more impersonal and less responsive to patients than it is today.

Genomics will be adopted by our health care system because it reinforces the last three of the four basic characteristics of American medicine: it is wasteful, technologically-driven, individualistic, and death-denying. There is no new medical technology as seductive and pervasive as genomic technology, a conclusion that can be gleaned simply from the mantra-like sayings from the genomics industry, including the magical “thousand dollar genome”; the mythical “right drug, for the right patient.” We simply cannot resist new technology and will welcome genomics into our lives and clinics.

Individualistic is, of course, the essence of genomics—we will treat you (or at least your genome) as unique, since you are the only person on the planet who has this genome (the essence of “personalized medicine”). This is not just good advertising, that is what most Americans actually want and expect from their physicians. Finally, as especially this chapter has focused on, we are death-denying. On one level we know we are mortal; but in our day-to-day lives we strongly deny this through our actions, and most Americans support an aggressive research program that has immortality (or at least living for 142 years) as a reasonable goal, no matter how unreasonable it actually is. All this is to say that genomics, although still in its infancy in American health care, has the potential to hit the health care system hard, and to vastly increase its cost because of its direct impact on the four characteristics that already make it by far the most expensive health care system in the world.

This means that unless we can control the introduction of genomics into medicine in a way that retains basic American legal and ethical values of informed consent and privacy, and unless we can get some control over the pricing of new drugs, genomic medicine will have to be rationed, and will likely only be available to the wealthy and well-insured. An alternative future is one based on a modified Medicare-for-all health plan where everyone is entitled to basic health care (including most of the new genomics), but no one is entitled to medical interventions that are not cost-effective or that simply prolong dying.

On an individual level (and mostly this book is about you as an individual and family member) our hope is that we have provided you with enough information, together with pro and con arguments, so that you can make an informed decision about the uses you, your family, and your physicians will make of the new genomics. We also hope this book will help you make informed decisions about what uses of genomics you think should be surrounded with privacy and consent, and what uses of genomics should be regulated or even outlawed. If we have helped or encouraged you to think critically about these complex issues, we will take this as some measure of success in sending our own uncoded genomic messages.

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WHEN THINKING OF GENOMIC FUTURES,
CONSIDER THESE THOUGHTS

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Science fiction often informs science and can
inform us about personal and policy issues.

The way genome scientists and biotech
entrepreneurs envision the future has
much in common with science fiction.

We humans now have the capacity to put
our entire species at risk of extinction.

Species-endangering experiments should
be treated like a crime against humanity.

Immortality is not a characteristic of being human.

Cloning to make medicine is a reasonable
scientific pursuit; cloning to make a baby is not.

There are many categories of proposed posthumans,
most of which require that our genomes (and
bodies) be replaced with electronic bits.

Before we try to make a “better baby,” we should
develop a global consensus on the characteristics
that make human life unique and worthwhile.

Because it reinforces three major characteristics
of American medicine as technologically-driven,
individualistic, and death-denying,
genomics will be eagerly embraced by American
medicine, even if it leads to rationing.