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Who's afraid of the human genome?

Who's Afraid of the Human Genome?

In Edward Albee's 1962 play, Who's Afraid of Virginia Woolf?, George (a historian) describes the agenda of modern biology to alter chromosomes: ....the genetic makeup of a sperm cell changed, reordered...to order, actually...for hair and eye color, stature, potency...I imagine...hairiness, features, health...and mind. Most important...- Mind. All imbalances will be corrected, sifted out...propensity for various diseases will be gone, longevity assured. We will have a race of men...test-tube-bred...incubator-born...superb and sublime.

George's view of the future was sinister and threatening in the early '60s. But today these same sentiments seem almost quaint. Mapping and sequencing the estimated 3 billion base pairs of the human genome (the 50,000 to 100,000 genes we are composed of) is "in"; raising serious questions about the project itself is "out." There is money to be made here, and even the "ethicists" are slated to have their share.

The Wall Street Journal summarized the case for the human genome project in early 1989 when it editorialized, "The techniques of gene identification, separation, and splicing now allow us to discover the basic causes of ailments and, thus, to progress toward cures and even precursory treatments that might ward off the onset of illness ranging from cancer to heart disease and AIDS." All that is lacking "is a blueprint--a map of the human genome." Noting that some members of the European Parliament had suggested that ethical questions regarding eugenics should be answered "before it proceeds," the Journal opined that "This of course, is a formula for making no progress at all." The editorial concluded, "The Human Genome Initiative...may well invite attack from those who are fearful of or hostile to the future. It should also attract the active support of those willing to defend the future" ("Chromosome Cartography," Wall Street Journal, 16 March 1989, A16).

The National Institutes of Health have created an Office of Human Genome Research headed by James Watson, and that office has issued a request for funding proposals to study "the ethical, social, and legal issues that may arise from the application of knowledge gained as a result of the Human Genome Initiative." The brief announcement makes it clear that such projects are to be about the "immense potential benefit to mankind" of the project, and focus on "the best way to ensure that the information is used in the most beneficial and responsible manner." Those with less optimism apparently need not apply.

Watson is perhaps the genome project's most prominent cheerleader, having said, among other things, that the project provides "an extraordinary potential for human betterment....We can have at our disposal the ultimate tool for understanding ourselves at the molecular level....The time to act is now." And, "How can we not do it? We used to think our fate is in our stars. Now we know, in large measure, our fate is in our genes."[1]

Are there any difficult legal and ethical problems involved in mapping the human genome, or is everything as straightforward and rosy as the project's advocates paint it? NIH plans to devote only 1 to 3 percent of its genome budget to exploring social, legal, and ethical issues, and James Watson sees no dangers ahead. But Watson himself, reflecting on his own early career, wrote in 1967: "Science seldom proceeds in the straightforward, logical manner...its steps are often very human events in which personalities and cultural traditions play major roles."[2]

Predicting the Future

The human genome project has been frequently compared to both the Manhattan Project and the Apollo Project, and "big biology" is clearly happy to have its own megaproject of a size formerly restricted to physicists and engineers. But the sheer size of these two other projects obscures more important lessons. The Manhattan Project is familiar, but it still teaches us volumes about science and the unforeseen impact of technological "advance." In late 1945, Robert Oppenheimer testified before the U.S. Congress on the role of science in the development of the atomic bomb: When you come right down to it, the reason that we did this job is because it was an organic necessity. If you are a scientist, you cannot stop such a thing. If you are a scientist, you believe that it is good to find out how the world works; that it is good to find what the realities are; that it is good to turn over to mankind at large the greatest possible power to control the world...[3]

The striking thing in Oppenheimer's testimony is his emphasis on the notion that science is unstoppable with the simultaneous insistence that its goal is control over nature, irreconcilable concepts that seem equally at the heart of the human genome project. Of course, with the atomic bomb, control quickly became illusory. The bomb, which carries with it the promise of the total annihilation of mankind, has made the nation state ultimately unstable and put it at the mercy of every other nation with the bomb. Necessity has forced all nuclear powers to move, however slowly, toward a transnational community.

The Apollo Project had its own problems. An engineering exercise, it was about neither the inevitability of scientific advance nor the control of nature. Instead, it was about military advantage and commercialism, disguised as science and hyped as a peace mission. As Walter McDougall has persuasively documented, the plaque Astronaut Paul Armstrong left on the moon, which read, "We came in peace for all mankind," was ironic: The moon was not what space was all about. It was about science, sometimes spectacular science, but mostly about spy satellites, comsats, and other orbital systems for military and commercial advantage. "Space for peace" could no more be engineered than social harmony, and the UN Outer Space Treaty...drew many nations into the hunt for advantage, not integration, through spaceflight.[4]

The Wall Street Journal seems more attuned to the commercial applications of gene mapping and sequencing than NIH, although Congressional support of the project is based primarily on the hope that mapping the genome can help the U.S. maintain its lead in the biotechnology industry. Neither ethicists nor social planners played any real role in the Manhattan or Apollo projects. It appears they will at least play some minor role in the Genome Project. What should the role be, and how should it be structured?

The Legal and Ethical Issues

The basic legal and ethical issues implicit in the human genome project are, on the first level, the same issues involved in current genetic screening for various traits, such as carrier status for sickle cell and Tay-Sachs disease.[5] Mapping and sequencing the human genome could, of course, lead to screening on an almost unimaginable scale--not only for certain diseases and traits, but also for tendencies toward certain diseases, such as cancer or manic depression. When all genetic traits can be deciphered in a genetic code (something that will require far more than a simple map of location), we will enter a new realm--taking not simply a quantitative step, but a qualitative one. Exactly what the consequences of such a step will be are not entirely foreseeable. Just as it was unforeseeable that the most lasting impact of the Apollo Project would be the photographs of the planet Earth: a fragile blue jewel that helped energize environmental protection on a global scale.

There will be issues of information control and privacy. Employers, insurance companies, the military, and the government, among others, will want to have access to the information contained in our genome. Scientists may want such information restricted, but they will certainly have little influence over its use, as they had little influence over the use of the atomic bomb. Routine genetic screening will be easy to justify under current law (which already mandates newborn screening in most states, for example) in many settings. Although we are utterly unprepared to deal with issues of mandatory screening, confidentiality, privacy, and discrimination, we will likely tell ourselves that we have already dealt with them well, and so the genome project poses no threat there.

The second order of issues relates to what is generally termed "eugenics," the improvement of the species, either by weeding out genetic "undesirables" or by actually using genetic techniques (breeding or genetic engineering) to increase the number of desirable traits in offspring. Given the U.S.'s sad history with involuntary sterilization, and the Nazi campaign on sterilization modeled after it, we are unlikely to engage in a direct program of sterilization. Nonetheless, eugenics has its supporters, and the European Parliament is right to be worried about the dangers of repeating history. It was our own U.S. Supreme Court, after all, that wrote in 1927, approving involuntary sterilization of the mentally retarded: We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.[6]

That may seem like ancient history, but in 1988 the U.S. Congress's Office of Technology Assessment, in discussing the "Social and Ethical Considerations" raised by the Human Genome Project, used strikingly similar language: Human mating that proceeds without the use of genetic data about the risks of transmitting diseases will produce greater mortality and medical costs than if carriers of potentially deleterious genes are alerted to their status and encouraged to mate with noncarriers or to use artificial insemination or other reproductive strategies.[7]

The primary reproductive strategy, mentioned only in passing in the report, will be genetic screening of human embryos--already technically feasible, but not nearly to the extent possible once the genome is understood. Such screening need not be required, people can be made to want it, even to insist on it as their right. As OTA notes, "New technologies for identifying traits and altering genes make it possible for eugenic goals to be achieved through technological as opposed to social control."

A third level of concern relates to the fact that powerful technologies do not just change what human beings can do, they change the very way we think--especially about ourselves. As one example, the ability to completely screen embryos could lead to a market in "high grade embryos" that could be bought and sold. They could also be gestated by contract or surrogate mothers, and the resulting child delivered to the purchaser of the embryo. This could lead not only to putting a specific price on all human characteristics (such as height, intelligence, race, eye color, etc.), but also to viewing children as commodities that have no rights or interests of their own, but that exist to further the interests of parents and future societies. A map of the human genome could also lead to a more narrowly focused view of a "normal" gene complement, and how much deviation we permit before considering any individual genome "abnormal," deviant, or diseased. We haven't seriously begun to think about how to think about this issue, even though we know normalcy will be invented, not discovered.

Taking Ethics Seriously

This listing is neither novel nor complete, but suggests that the legal and ethical issues posed by the human genome project are real and poorly appreciated. Other issues that are currently unanticipated may, of course, even turn out to be more important. Today's fascination, however, is not with substance, but rather with procedure: How should the genome actually be mapped? With today's techniques, it is estimated that it takes forty professional years for a biologist to sequence one gene. Assuming 100,000 genes, it would take 400,000 biologists ten years working full time.[8] This seems an immense waste of time and talent, as much faster methods of sequencing will be available within the coming decade. On the other hand, the U.S. is worried that if it waits to get deeply into this project, other countries, especially Japan, might gain commercial advantage. Thankfully, the scope of the project, as well as the capabilities possessed by other countries, make it impossible for the U.S. to complete the genome project alone. But what form should international cooperation take?

Some, including James Watson, have suggested dividing up the genome among countries, with each being responsible for working on a particular chromosome or part of a chromosome. The Soviet Union, Watson has suggested, "might take a big chromosome." Canada might get involved "if they thought there was a particular Canadian chromosome...."[9] Not the least of the problems with this suggestion is that there is no international organization with any authority to make the assignments or even to accept volunteers. Genome researchers have formed their own international group, the Human Genome Organization (HUGO), made up of forty-two scientists. Some scientists think of it as a "U.N. for the human genome." In fact, it is self-made and self-refereeing, is composed entirely of scientists, and cannot claim any legitimate authority over the genome. Nonetheless, with no special expertise, "HUGO intends to provide a forum for the discussion of ethical, social, commercial, and legal considerations relating to the genome project."[10]

At a Workshop on International Cooperation for the Human Genome Project held in Valencia in October, 1988, French researcher Jean Dausset suggested that the genome project posed great potential hazards that could open the door to Nazi-like atrocities. To attempt to avoid such results, he suggested that the conferees agree on a moratorium on genetic manipulation of germ line cells, and a ban on gene transfer experiments in early embryos. Reportedly, the proposal won wide agreement among the participants, and was watered down to a resolution calling for "international cooperation" only after American participant Norton Zinder successfully argued that the group had no authority to make such a resolution stick.[11]

Zinder was, of course, correct, and a moratorium and ban on research that no one wants to do at this point would have only symbolic value--and negative symbolic value at that. It would signal that the scientists could handle the ethical issues alone, and could monitor their own work. It would tend to quiet the discussion of both germ line research and gene transfers in early embryos--both subjects that deserve wide public debate. But Dausset also had a point. The Nazi atrocities grew out of the combination of a public health ethic that saw the abnormal as disposable, and a tyrannical dictatorship that was able to give the physicians and public health authorities unlimited authority to put their program into bestial practice.[12]

Ethics is generally taken seriously by physicians and scientists only when it either fosters their agenda or does not interfere with it. If it cautions a slower pace or a more deliberate consideration of science's darker side, it is dismissed as "fearful of the future," anti-intellectual, or simply uninformed. The genome project has been overhyped and oversold. It is the obligation of those who take legal and ethical issues seriously to insure that the dangers, as well as the opportunities, are rigorously and publicly explored. We must get beyond Honey's response to George's musings on our genetic future in Albee's play: "How exciting!" References [1]Leon Jaroff, "The Gene Hunt," Time, 20 March 1989, 62-67. [2]James Watson, The Double Helix, (NY: Macmillan, 1968), p. xi. [3]Richard Rhodes, The Making of the Atomic Bomb (NY: Simon & Schuster, 1986), 761. [4]Walter McDougall, The Heavens and the Earth (NY: Basic Books, 1985), 413. [5]See, e.g., Ruth Macklin, "Mapping the Human Genome: Problems of Privacy and Free Choice," in Genetics and the Law III, Aubrey Milunsky & George J. Annas, eds. (NY: Plenum, 1986), 107-114. [6]Buck v. Bell, 274 U.S. 200, 207, (1927). [7]U.S. Congress, Office of Technology Assessment, Mapping Our Genes (Washington D.C.: Government Printing Office, 1988), 84. [8]E. Brown, "Coordination Seen as Key to Genome Mapping Project," American Medical News, 19 May 1989, 26. [9]David Dickson, "Watson Floats Plan to Carve Up the Genome," Science, 5 May 1989, 521. [10]Victor McKusick, "Mapping and Sequencing the Human Genome," New England Journal of Medicine 320:14 (1989), 910-15. [11]Leslie Roberts, "Carving Up the Human Genome," Science, 2 December 1988, 1244. [12]Robert Proctor, Racial Hygiene (Cambridge, MA: Harvard University Press, 1988). George J. Annas is Utley Professor of Health Law, Boston University School of Medicine, and chief, Health Law Section, Boston University School of Public Health.
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Title Annotation:ethical and legal aspects of research
Author:Annas, George J.
Publication:The Hastings Center Report
Date:Jul 1, 1989
Words:2808
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