Dna: The Secret of Life
Page 46
I see only one truly rational argument for delay in the advance of human genetic enhancement. Most scientists share this uncertainty: can germ-line gene therapy ever be carried out safely? The case of Jesse Gelsinger has cast a long shadow on gene therapy in general. It's worth pointing out, though, that contrary to appearances, germ-line gene therapy should in principle be easier to accomplish safely than somatic cell therapy. In the latter case, we are introducing genes into billions of cells, and there is always a chance, as in the recent SCID case in France, that a crucial gene or genes will be damaged in one of those cells, resulting in the nightmarish side effect of cancer. With germ-line gene therapy, in contrast, we are inserting DNA into a single cell, and the whole process can accordingly be much more tightly monitored. But the stakes are even higher in germ-line therapy: a failed germ-line experiment would be an unthinkable catastrophe – a human being born flawed, perhaps unimaginably so, owing to our manipulation of his or her genes. The consequences would be tragic. Not only would the affected family suffer, but all of humankind would lose because science would be set back.
When gene therapy experiments in mice run aground, no career is aborted, no funding withdrawn. But should gene improvement protocols ever lead to children with diminished rather than improved potential for life, the quest to harness the power of DNA would surely be delayed for years. We should attempt human experimentation only after we have perfected methods to introduce functional genes into our close primate relatives. But even when monkeys and chimpanzees (an even closer match) can be safely gene enhanced, the start of human experimentation will require resolute courage; the promise of enormous benefit won't be fulfilled except through experiments that will ultimately put lives at some risk. As it is, conventional medical procedures, especially new ones, require similar courage: brain surgery too may go awry, and yet patients will undergo it if its potential positives outweigh the dangers.
My view is that, despite the risks, we should give serious consideration to germ-line gene therapy. I only hope that the many biologists who share my opinion will stand tall in the debates to come and not be intimidated by the inevitable criticism. Some of us already know the pain of being tarred with the brush once reserved for eugenicists. But that is ultimately a small price to pay to redress genetic injustice. If such work be called eugenics, then I am a eugenicist.
Over my career since the discovery of the double helix, my awe at the majesty of what evolution has installed in our every cell has been rivaled only by anguish at the cruel arbitrariness of genetic disadvantage and defect, particularly as it blights the lives of children. In the past it was the remit of natural selection – a process that is at once marvelously efficient and woefully brutal – to eliminate those deleterious genetic mutations. Today, natural selection still often holds sway: a child born with Tay-Sachs who dies within a few years is – from a dispassionate biological perspective – a victim of selection against the Tay-Sachs mutation. But now, having identified many of those mutations that have caused so much misery over the years, it is in our power to sidestep natural selection. Surely, given some form of preemptive diagnosis, anyone would think twice before choosing to bring a child with Tay-Sachs into the world. The baby faces the prospect of three or four long years of suffering before death comes as a merciful release. And so if there is a paramount ethical issue attending the vast new genetic knowledge created by the Human Genome Project, in my view it is the slow pace at which what we now know is being deployed to diminish human suffering. Leaving aside the uncertainties of gene therapy, I find the lag in embracing even the most unambiguous benefits to be utterly unconscionable. That in our medically advanced society almost no women are screened for the fragile X mutation a full decade after its discovery can attest only to ignorance or intransigence. Any woman reading these words should realize that one of the important things she can do as a potential or actual parent is to gather information on the genetic dangers facing her unborn children – by looking for deleterious genes in her family line and her partner's, or, directly, in the embryo of a child she has conceived. And let no one suggest that a woman is not entitled to this knowledge. Access to it is her right, as it is her right to act upon it. She is the one who will bear the immediate consequences.
Four years ago, my views on this subject received a very cold reception in Germany. The publication of my essay, "Ethical Implications of the Human Genome Project," in the highly respected newspaper Frankfurter Allgemeine Zeitung (FAZ), provoked a storm of criticism. Perhaps this was the editors' intent: Without my knowledge, let alone consent, the paper had given my essay a new title devised by the translator as "The Ethic of the Genome – Why We Should Not Leave the Future of the Human Race to God." While I subscribe to no religion and make no secret of my secular views, I would never have framed my position as a provocation to those who do. A surprisingly hostile response came from a man of science, the president of the German Federal Chamber of Medical Doctors, who accused me of "following the logic of the Nazis who differentiate between a life worth living and a life not worth living." A day later, an editorial entitled "Unethical Offer" appeared in the same paper that had published mine. The writer, Henning Ritter, argued with self-righteous conviction that in Germany the decision to end the lives of genetically damaged fetuses would never become a private matter. In fact, his grandstanding displayed a simple ignorance of the nation's law; in Germany today, it is solely the right of a pregnant woman, upon receipt of medical advice, to decide whether to carry her fetus to term.
The more honorable critics were those who argued openly from personal beliefs, rather than exploiting the terrifying specter of the German past. The respected German president, Johannes Rau, countered my views with an assertion that "value and sense are not solely based on knowledge." As a practicing Protestant, he finds truths in religious revelation while I, a scientist, depend only on observation and experimentation. I therefore must evaluate actions on the basis of my moral intuition. And I see only needless harm in denying women access to prenatal diagnosis until, as some would have it, cures exist for the defects in question. In a less measured comment, the Protestant theologian Dietmar Mieth called my essay the "Ethics of Horror," taking issue with my assertion that greater knowledge will furnish humans better answers to ethical dilemmas. But the existence of a dilemma implies a choice to be made, and choice to my mind is better than no choice. A woman who learns that her fetus has Tay-Sachs now faces a dilemma about what to do, but at least she has a choice, where before she had none. Though I am sure that many German scientists agree with me, too many seem to be cowed by the political past and the religious present: except for my longtime valued friend Benno Müller-Hill, whose brave book on Nazi eugenics, Murderous Science (Tödliche Wissenschaft), still rankles the German academic establishment, no German scientist saw reason to rise to my defense.
I do not dispute the right of individuals to look to religion for a private moral compass, but I do object to the assumption of too many religious people that atheists live in a moral vacuum. Those of us who feel no need for a moral code written down in an ancient tome have, in my opinion, recourse to an innate moral intuition long ago shaped by natural selection promoting social cohesion in groups of our ancestors.
The rift between tradition and secularism first opened by the Enlightenment has, in more or less its present form, dictated biology's place in society since the Victorian period. There are those who will continue to believe humans are creations of God, whose will we must serve, while others will continue to embrace the empirical evidence indicating that humans are the product of many millions of generations of evolutionary change. John Scopes, the Tennessee high school teacher famously convicted in 1925 of teaching evolution, continues to be symbolically retried in the twenty-first century; religious fundamentalists, having their say in designing public school curricula, continue to demand that a religious story be taught as a serious alternative to Darwinism. With its direct contradiction of religious accoun
ts of creation, evolution represents science's most direct incursion into the religious domain and accordingly provokes the acute defensiveness that characterizes creationism. It could be that as genetic knowledge grows in centuries to come, with ever more individuals coming to understand themselves as products of random throws of the genetic dice – chance mixtures of their parents' genes and a few equally accidental mutations – a new gnosis in fact much more ancient than today's religions will come to be sanctified. Our DNA, the instruction book of human creation, may well come to rival religious scripture as the keeper of the truth.
I may not be religious, but I still see much in scripture that is profoundly true. In the first letter to the Corinthians, for example, Paul writes:
Though I speak with the tongues of men and of angels, but have not love, I have become sounding brass or a clanging cymbal.
And though I have the gift of prophecy, and understand all mysteries and all knowledge, and though I have all faith, so that I could remove mountains, but have not love, I am nothing.
Paul has in my judgment proclaimed rightly the essence of our humanity. Love, that impulse which promotes our caring for one another, is what has permitted our survival and success on the planet. It is this impulse that I believe will safeguard our future as we venture into uncharted genetic territory. So fundamental is it to human nature that I am sure that the capacity to love is inscribed in our DNA – a secular Paul would say that love is the greatest gift of our genes to humanity. And if someday those particular genes too could be enhanced by our science, to defeat petty hatreds and violence, in what sense would our humanity be diminished?
In addition to laying out a misleadingly dismal vision of our future within the film itself, the creators of Gattaca concocted a promotional tag line aimed at the deepest prejudices against genetic knowledge: "There is no gene for the human spirit." It remains a dangerous blind spot in our society that so many wish this were so. If the truth revealed by DNA could be accepted without fear, we should not despair for those who follow us.
NOTES
INTRODUCTION: THE SECRET OF LIFE
xx "Today, we are": White House Press Release, available at: http://www.ornl.gov/hgmis/project/clinton1.html
CHAPTER 1: BEGINNINGS OF GENETICS
7 "Hair, nails, veins": Anaxagoras as cited in F. Vogel and A. G. Motulsky, Human Genetics (Berlin, N.Y.: Springer, 1996), p. 11.
10 "very difficult for me": Mendel as cited in R. Marantz Henig, A Monk and Two Peas (London: Weidenfeld & Nicolson, 2000), pp. 117-18.
17 "The elephant is": Charles Darwin, The Origin of Species (New York: Penguin, 1985), p. 117.
20 "I profess to be": Francis Galton, Narrative of an Explorer in Tropical South Africa (London: Ward Lock, 1889), pp. 53-4.
21 "a devil": William Shakespeare, The Tempest (IV:i: 188-9).
21 "I have no patience": Francis Galton, Hereditary Genius (London: MacMillan, 1892), p. 12.
22 "It is easy": ibid., p. 1. 22 "there is now no": George Bernard Shaw as cited in Diane B. Paul, Controlling Human Heredity (Atlantic Highlands, N.J.: Humanities Press, 1995), p. 75.
24 "The Wyandotte is": ibid., p. 66.
26 "family with mechanical": C. B. Davenport, Heredity in Relation to Eugenics (New York: Henry Holt, 1911), p. 56.
26 "broad-shouldered, dark hair": ibid., p. 245.
27 "More children": Margaret Sanger as quoted in D. M. Kennedy, Birth Control in America (New Haven: Yale University Press, 1970), p. 115.
28 "criminals, idiots": Harry Sharp as cited in E. A. Carlson, The Unfit (Cold Spring Harbor, N.Y.: Cold Spring Harbor Laboratory Press, 2001), p. 218.
28 "It is better": Oliver Wendell Holmes as cited in ibid., p. 255.
30 "Under existing": Madison Grant, The Passing of the Great Race (New York: Scribner, 1916), p. 49.
31 "America must": Calvin Coolidge as cited in D. Kevles, In the Name of Fugenics (Cambridge, Mass.: Harvard University Press, 1995), p. 97.
31 "the farseeing": Harry Laughlin as cited in S. Kühl, The Nazi Connection (New York: Oxford University Press, 1994), p. 88.
31 "must declare": Adolf Hitler's Mein Kampf' as cited in Paul, p. 86.
31 "Those who": Adolf Hitler, Mein Kampf, trans. Ralph Manheim (Boston: Houghton Mifflin Company, 1971), p. 404.
31 "law for": Benno Müller-Hill, Murderous Science (Cold Spring Harbor, N.Y.: Cold Spring Harbor Laboratory Press, 1998), p. 35.
32 "extra-marital": ibid.
33 "simply the meddlesome": Alfred Russel Wallace as cited in A. Berry, Infinite Tropics (New York: Verso, 2002), p. 214.
33 "orthodox eugenicists": Raymond Pearl as cited in D. Miklos and E. A. Carlson, "Engineering American Society: The Lesson of Eugenics," Nature Genetics 1 (2000): 153-58.
CHAPTER 2: THE DOUBLE HELIX
36 "Inheritance insures": Friedrich Miescher as cited in Franklin Portugal and Jack Cohen, A Century of DNA (Cambridge, Mass.: MIT Press, 1977), p. 107.
46 "stupid, bigoted": Rosalind Franklin as cited in Brenda Maddox, Rosalind Franklin (New York: HarperCollins, 2002), p. 82.
54 "Nobody told me": Linus Pauling, interview, as cited at http://www.achievement.org/autodoc/page/pau0int-1
56 "The most beautiful experiment": John Cairns as quoted in Horace Judson, The Eighth Day of Creation (New York: Simon & Schuster, 1979), p. 188.
CHAPTER 3: READING THE CODE
68 "That's when I saw": Sydney Brenner, My Life in Science (London: BioMed Central, 2001), p. 26.
71 "We're the only two": Francis Crick as quoted in Horace Judson, The Eighth Day of Creation (New York: Simon & Schuster, 1979), p. 485.
77 "Without giving me": François Jacob as quoted in ibid., p. 385.
CHAPTER 4: PLAYING GOD
84 "rivaled the importance": Jeremy Rifkin as quoted by Randall Rothenberg in "Robert A. Swanson: Chief Genetic Officer," Esquire, December 1984.
88 "from corned beef to": Stanley Cohen, http://www.accessexcellence.org/AB/WYW/cohen/
92 "She made": Paul Berg as quoted at http://www. ascb.org/profiles/9610.html
93 "scientists throughout": Paul Berg et al, "Potential Biohazards of Recombinant DNA Molecules," letter to Science 185 (1974): 303.
93 "until the potential": ibid.
93 "our concern": ibid.
94 "the molecular biologists had clearly reached": Michael Rogers, "The Pandora's Box Congress," Rolling Stone 189 (1975): 36-48.
98 "I felt": Leon Heppel as quoted in James D. Watson and J. Tooze, The DNA Story (San Francisco: W. H. Freeman and Co., 1981), p. 204.
98 "In his cranberry": Arthur Lubow as cited in ibid., p. 121.
99 "In today's": Alfred Vellucci as cited in ibid., p. 206.
100 "Compared to": Watson as cited in James D. Watson, A Passion for DNA (Cold Spring Harbor, N.Y.: Cold Spring Harbor Laboratory Press, 2001), p. 73.
104 "You get a nice gold medal": Fred Sanger as quoted by Anjana Ahuja, "The Double Nobel Laureate Who Began the Book of Life," The Times (London), 12 January 2000.
CHAPTER 5: DNA, DOLLARS, AND DRUGS
109 "to become": Herb Boyer as quoted in Stephen Hall, Invisible Frontiers (New York: Oxford University Press, 2002), p. 65.
118 "a live human-made": Diamond vs. Chakrabarty et al. as cited in Nicholas Wade, "Court Says Lab-Made Life Can Be Patented," Science 208 (1980): 1445.
132 "I'll make it an issue": Jeremy Rifkin as cited in Daniel Charles, Lords of the Harvest (Cambridge, Mass.: Perseus, 2001), p. 94.
CHAPTER 6: TEMPEST IN A CEREAL BOX
134 "If man": http://www.nrdc.org/health/pesticides/hcarson.asp
137 "operating outside": Mary-Dell Chilton et al. as cited in Daniel Charles, Lords of the Harvest (Cambridge, Mass.: Perseus, 2001), p. 16.
137 "loved the smell": Rob Horsch as quoted in ibid., p. 1.
149 "Put a molecular": Bob Meyer as quoted in ibid., p. 132.
154 "I naively": Roger Beachy, Daphne Preuss, and Dean Dellapenna, "The Genomic Revolution: Everything Y
ou Wanted to Know About Plant Genetic Engineering but Were Afraid to Ask," Bulletin of the American Academy of Arts and Sciences, Spring 2002, p. 31.