The code breaker, p.33

The Code Breaker, page 33

 

The Code Breaker
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  Huxley said that he wrote the book as a reaction to “the current drift toward totalitarian control of everything.”7 But as was the case with information technology, the danger of genetic technology might not be too much government control. Instead, it may be too much individual control. The excess of the early twentieth-century eugenics movement in America and then the evil of the Nazi program gave a horrid stench to the idea of state-controlled genetic projects. It gave eugenics, which means “good genes,” a bad name. Now, however, we may be ushering in a new eugenics—a liberal or libertarian eugenics, one based on free choice and marketed consumerism.

  Huxley may have supported this free-market eugenics. He wrote a little-known utopian novel in 1962, Island, in which women voluntarily choose to be inseminated by sperm from men with high IQs and artistic talents. “Most married couples feel that it’s more moral to take a shot at having a child of superior quality than to run the risk of slavishly reproducing whatever quirks and defects may happen to run in the husband’s family,” the main character explains.8

  Free-market eugenics

  In our day and age, decisions about genetic editing are likely to be driven, for better or worse, by consumer choice and the persuasive power of marketing. So what’s wrong with that? Why shouldn’t we leave decisions about gene editing to individuals and parents, just like we do with other reproductive choices? Why do we have to convene ethics conferences, seek a broad societal consensus, and wring our collective hands? Isn’t it best to allow the decisions to be made by me and you and other individuals who want the best prospects for our kids and grandkids?9

  Let’s begin by loosening our minds and avoiding a bias for the status quo by asking the most basic question: What’s wrong with genetic improvements? If we can do so safely, why shouldn’t we prevent abnormalities, diseases, and disabilities? Why not improve our capabilities and create enhancements? “I don’t see why eliminating a disability or giving a kid blue eyes or adding fifteen IQ points is truly a threat to public health or to morality,” says Doudna’s friend George Church, the Harvard geneticist.10

  In fact, aren’t we morally obligated to look after the welfare of our children and of future humans in general? Almost all species share an evolutionary instinct—encoded in the essence of evolution itself—to use whatever wiles they can muster to maximize the chance that their offspring will thrive.

  The foremost philosopher advocating this view is Julian Savulescu, a professor of practical ethics at Oxford. He coined the phrase “procreative beneficence” to make the case that it is moral to choose the best genes for your unborn children. Indeed, he argues, it may be immoral not to. “Couples should select embryos or fetuses which are most likely to have the best life,” he asserts. He even dismissed the concern that this could allow rich people to buy better genes for their children and thereby create a new class (or even subspecies) of enhanced elites. “We should allow selection for non-disease genes even if this maintains or increases social inequality,” he writes, specifically citing “genes for intelligence.”11

  * * *

  To analyze that point of view, let’s do another thought experiment. Imagine a world where genetic engineering is determined mainly by individual free choice, with few government regulations and no pesky bioethics panels telling us what’s permissible. You go into a fertility clinic and are given, as if at a genetic supermarket, a list of traits you can buy for your children. Would you eliminate serious genetic diseases, such as Huntington’s or sickle cell? Of course you would. I personally would also choose that my kids not have genes leading to blindness. How about avoiding below-average height or above-average weight or a low IQ? We would all probably select those options as well. I might even choose a premium-priced option for extra height and muscles and IQ. Now let’s say there were, hypothetically, genes that predisposed a child to more likely be straight rather than gay. You’re not prejudiced, so you’d likely resist choosing that option, at least initially. But then, assuming no one was judging you, might you rationalize that you wanted your child to avoid discrimination or be a little bit more likely to produce grandchildren for you? And while you were at it, might you throw in blond hair and blue eyes as well?

  Whoa!!! Something just went wrong. It really did turn out to be a slippery slope! Without any gates or flags, we might all go barreling down at uncontrollable speed, taking society’s diversity and the human genome along with us.

  Although this sounds like a scene from Gattaca, a real-world version of this baby-designing service—using preimplantation diagnosis—was launched in 2019 by a New Jersey startup, Genomic Prediction. In vitro fertilization clinics can send the company genetic samples of prospective babies. The DNA in cells from days-old embryos is sequenced to come up with a statistical estimate of the chances of developing a long list of conditions. Prospective parents can choose which embryo to implant based on the characteristics they want in their child. The embryos can be screened for single-gene disorders such as cystic fibrosis and sickle cell. The tests can also statistically predict multigene conditions, such as diabetes, heart attack risk, hypertension, and, according to the company’s promotional material, “intellectual disability” and “height.” Within ten years, the founders say, they are likely to be able to make predictions of IQ so that parents can choose to have very smart children.12

  So now we can see a problem with simply leaving such decisions to individual choice. A liberal or libertarian genetics of individual choice could eventually lead us—just as surely as government-controlled eugenics—to a society with less diversity and deviation from the norm. That might be pleasing to a parent, but we would end up in a society with a lot less creativity, inspiration, and edge. Diversity is good not only for society but for our species. Like any species, our evolution and resilience are strengthened by a bit of randomness in the gene pool.

  The problem is that the value of diversity, as our thought experiments showed, can conflict with the value of individual choice. As a society, we may feel that it is profoundly beneficial to the community to have people who are short and tall, gay and straight, placid and tormented, blind and sighted. But what moral right do we have to require another family to forgo a desired genetic intervention simply for the sake of adding to the diversity of society? Would we want the state to require that of us?

  * * *

  One reason to be open to some kind of limit on individual choice is that gene editing could exacerbate inequality and even permanently encode it into our species. Of course, we already tolerate some inequality based on birth and parental choices. We admire parents who read to their kids, make sure they go to good schools, and coach them in soccer. We even accept, perhaps with a roll of the eyes, those who hire SAT tutors and send their kids to computer camp. Many of these confer the advantages of inherited privilege. But the fact that inequality already exists is not an argument to increase or permanently enshrine it.

  Permitting parents to buy the best genes for their kids would represent a true quantum leap in inequality. In other words, it won’t be just a big leap, but a leap into a new disconnected orbit. After centuries of reducing aristocratic and caste systems based on birth, most societies have embraced a principle of morality that is also a basic premise of democracy: we believe in equal opportunity. The social bond that arises from this “created equal” creed would be severed if we turn financial inequalities into genetic inequalities.

  This does not mean that gene editing is inherently bad. But it does argue against allowing it to be part of a free-market bazaar where the rich can buy the best genes and ingrain them into their families.13

  Restricting individual choice would be difficult to enforce. Various college admissions scandals show us how far some parents will go and what they will pay to give their kids an advantage. Add to that the natural instinct of scientists to pioneer procedures and make discoveries. If a nation imposes too many restrictions, its scientists will move elsewhere and its wealthy parents will seek clinics in some enterprising Caribbean island or foreign haven.

  Despite such objections, it’s possible to aim for some social consensus on gene editing rather than simply leaving the issue totally to individual choice. There are practices we cannot fully control, from shoplifting to sex trafficking, that are kept to a minimum by a combination of legal sanctions and social shaming. The Food and Drug Administration, for example, regulates new drugs and procedures. Even though some people score drugs for off-label purposes or travel to places for unconventional treatments, FDA restrictions are pretty effective. Our challenge is to figure out what the norms for gene editing should be. Then we can try to find the regulations and social sanctions that will cause most people to follow them.14

  Playing God

  Another reason we might feel uncomfortable with directing our evolution and designing our babies is that we would be “playing God.” Like Prometheus snatching fire, we would be usurping a power that properly resides above our pay grade. In so doing, we’d lose a sense of humility about our place in Creation.

  The reluctance to play God can also be understood in a more secular way. As one Catholic theologian said at a National Academy of Medicine panel, “When I hear someone say that we shouldn’t play God, I’d guess that ninety percent of the time they are atheists.” The argument can simply mean that we should not have the hubris to believe that we should fiddle with the awesome, mysterious, delicately interwoven, and beautiful forces of nature. “Evolution has been working toward optimizing the human genome for 3.85 billion years,” says NIH director Francis Collins, who is not an atheist. “Do we really think that some small group of human genome tinkerers could do better without all sorts of unintended consequences?”15

  Our respect for nature and nature’s God should, indeed, instill some humility about meddling with our genes. But should it absolutely forbid it? After all, we Homo sapiens are part of nature, no less so than bacteria and sharks and butterflies. Through its infinite wisdom or blind stumbling, nature has endowed our species with an ability to edit our own genes. If it’s wrong for us to use CRISPR, the reason cannot merely be that it’s unnatural. It’s just as natural as all of the tricks that bacteria and viruses use.

  For all of history, humans (and every other species) have been battling rather than accepting nature’s poisoned offerings. Mother Nature has produced massive suffering and distributed it unequally. Thus we devise ways to combat plagues, cure diseases, fix disabilities, and breed better plants, animals, and children.

  Darwin wrote about “the clumsy, wasteful, blundering, low, and horridly cruel works of nature.” Evolution, he discovered, bears no fingerprints of an intelligent designer or benevolent God. He made a detailed list of things that evolved in a flawed way, including the path of the urinary tract in male mammals, the poor drainage of the sinuses in primates, and the inability of humans to synthesize vitamin C.

  These design flaws are not mere exceptions. They are the natural consequence of the way evolution progresses. It stumbles upon and then cobbles together new features, sort of like what happened during the worst eras of Microsoft Office, rather than proceed with a master plan and end product in mind. Evolution’s primary guide is reproductive fitness—what traits might cause an organism to reproduce more—which means it permits, and perhaps even encourages, all sorts of plagues, including coronaviruses and cancers, that afflict an organism once its childbearing use is over. This does not mean that, out of respect for nature, we should quit searching for ways to fight against coronaviruses and cancer.16

  * * *

  There is, however, a more profound argument against playing God, best articulated by the Harvard philosopher Michael Sandel. If we humans find ways to rig the natural lottery and engineer the genetic endowments of our children, we will be less likely to view our traits as gifts that we accept. That would undermine the empathy that comes from our sense of “there but for the grace of God go I” toward our fellow humans who are less lucky. “What the drive to mastery misses and may even destroy is an appreciation of the gifted character of human powers and achievements,” Sandel writes. “To acknowledge the giftedness of life is to recognize that our talents and powers are not wholly our own doing.”17

  Of course I don’t fully believe, nor does Sandel, that we must be reverential about the giftedness of all that nature offers us unbidden. Human history has been a quest—a very natural one—to master challenges that happen to us unbidden, be they pandemics or droughts or storms. Few of us would regard Alzheimer’s or Huntington’s to be a result of giftedness. When we create chemotherapies to fight cancer or vaccines to fight coronaviruses or gene-editing tools to fight birth defects, we are, quite properly, exercising mastery over nature rather than accepting the unbidden as a gift.

  But Sandel’s argument should nudge us, I think, toward some humility, especially when it comes to trying to design enhancements and perfections for our children. He makes a profound, beautiful, and even spiritual case for eschewing attempts at complete mastery over the unbidden. We can steer a course that avoids a Promethean quest for controlling our endowments while also avoiding complete submission to the vagaries of a lottery. Wisdom involves finding the right balance.

  At the Hong Kong summit

  CHAPTER 43 Doudna’s Ethical Journey

  When it became clear that the CRISPR-Cas9 tool that she co-invented could be used for editing human genes, Doudna had a “visceral, knee-jerk reaction.” The idea of editing a child’s genes, she says, felt unnatural and scary for humanity. “In the early days I was instinctively against it.”1

  Her position began to change at the January 2015 conference on gene editing in Napa Valley that she organized. At one of the sessions, during a heated debate over whether germline editing should ever be allowed, a participant leaned forward and said quietly, “Someday we may consider it unethical not to use germline editing to alleviate human suffering.”

  The idea that germline editing was “unnatural” began to recede in her thinking. All medical advances attempt to correct something that happened “naturally,” she realized. “Sometimes nature does things that are downright cruel, and there are many mutations that cause enormous suffering, so the idea that germline editing was unnatural began to carry less weight for me,” she says. “I am not sure how to make a sharp distinction in medicine between what is natural and what is unnatural, and I think it’s dangerous to use that dichotomy to block something that could alleviate suffering and disability.”

  Once she became famous for her gene-editing discoveries, she began to hear stories from people who had been affected by genetic diseases and were yearning for science to help. “The ones about kids were especially touching to me as a mother,” she recalls. One example sticks in her mind. A woman sent beautiful pictures of her new baby boy, bald and cute, which reminded Doudna of when her own son, Andy, was born. The baby had just been diagnosed with a genetic neurodegenerative disease. His nerve cells would soon start dying and eventually he would be unable to walk, speak, then swallow or eat. He was doomed to die an early and painful death. The note was a wrenching plea for help. “How could you not want to make progress on coming up with ways to prevent such a thing?” Doudna asks. “My heart broke.” If gene editing could prevent this in the future, it would be immoral not to pursue it, she decided. She answered all such emails. She wrote the mother back and promised that she and other researchers were working diligently to find therapies and preventions for such genetic conditions. “But I also had to tell her that it would be years before something like gene editing would be potentially useful for her,” she says. “I didn’t want to mislead her in any way.”

  After appearing at the World Economic Forum in Davos in January 2016, where she shared her ethical qualms about gene editing, Doudna was pulled aside by another woman on the panel, who described how her sister had been born with a degenerative disease. It affected not only her but the lives and finances of her whole family. “She said if we could have done gene editing to avoid that, everyone in her family would be absolutely in favor of it,” Doudna recalls. “She was very emotional about the cruelty of those who would prevent germline editing, and she was on the verge of tears. I found it so touching.”

  Later that year, a man came to see her at Berkeley. His father and grandfather had died of Huntington’s. Three of his sisters had been diagnosed with it and faced a slow, agonizing death. Doudna refrained from asking the man if he was also afflicted. But his visit convinced her that if germline editing became a safe and effective way to eliminate Huntington’s, she was in favor. Once you’ve seen the face of someone with a genetic disease, she says, especially one like Huntington’s, it’s hard to support why we would refrain from gene editing.

  Her thinking was also influenced by long conversations with Janet Rossant, the chief of research at the Hospital for Sick Children in Toronto, and George Daley, dean of the Harvard Medical School. “I realized how we were on the verge of being able to correct disease-causing mutations,” she says. “How could you not want to do that?” Why should CRISPR be held to a far higher standard than any other medical procedure?

  The evolution in her thinking made her more sympathetic to the view that many gene-editing decisions should be left to individual choice rather than to bureaucrats and ethics panels. “I’m an American, and putting a high priority on personal freedom and choice is part of our culture,” she says. “I also think that as a parent I feel that I would want to have that choice to make about my own health or own family’s health as these new technologies come along.”

 

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