PSTX Seal

Ready or Not? Designer Genes and The Genetic Revolution

So hard for me to realize . . . A mother, and all this dirt, and gods, and old age, and disease . . . It's almost inconceivable. I shall never understand . . .
-Aldous Huxley, Brave New World

Until 1865, when Gregor Mendel first published his results of simple genetic crosses, nobody really understood the origin of inheritance. Although Mendel worked within the context of other early geneticists,l it was his postulates that set the stage for the genetic revolution. Today we live in the throes of the genetic revolution. Around the year 2003, the Human Genome Project will have located, mapped, and sequenced the entire complement of human genes. We have reached a crucial point in our history-this is a time when we must define for ourselves vital questions, and earnestly seek out their resolution, if we are to avoid a baseless society prone to repeat the mistakes of other eugenic eras.

Regardless of the ideological framework in which this occurs, theologians, philosophers, and scientists can all agree, at least, on the general problems we face as we become capable of manipulating our genetic ingredients. We can now predict whether an adult will be susceptible to Huntington's disease or colon cancer; we can now determine whether a fetus will be born with sickle-cell anemia or Tay-Sach's disease; and soon, as the genetic links become more clear, we will be able to foresee who will be prone to alcoholism, to cancer, even to obesity.2 We are now experimentally treating diseases like familiar hypercholesterolemia, cystic fibrosis, and muscular dystrophy with gene therapy. When we succeed, what next? At what price? Those concerned with the ethical consequences of designer genes, genes specifically designed to remove "undesirable" or add "beneficial" traits, must focus their attention on these questions. The genetic revolution will move forward regardless of our readiness, and the consequences of genetic manipulation touch both the individual and society: at stake is the very definition of what it means to be human, and where humanity is heading. It is imperative that this emerging science be guided by an awareness of the ethical implications of genetic intervention, the moral and practical questions it raises, along with the deeper philosophical consequences-for both the individual and society as a whole.

What is a Human Being?

Learn from me, if not by my precepts, at least by my example, how dangerous is the acquirement of knowledge and how much happier that man is who believes his native town to be the world, than he who aspires to become greater than his nature will allow.
-Mary Shelley, Frankenstein

One of the most important questions that can be raised, if we are to find a place for genetic manipulation, is what is it that makes a human being? To what extent do the genes we carry determine who we are, to what extent does environment play a role? Is there such a thing as a "soul," or "destiny"? When does life begin, and when does it end? Certainly, as can be seen from any one of the numerous issues that can be derived from any one of these questions, or from the thousands of years of philosophic and theological tradition from which they arise, there is no ultimate answer. Perhaps what is more important is the examination of what is implied about who we are in the questions themselves.

To be a human being is to be composed of things material and immaterial. Regardless of the conditions put on that statement, or the vocabulaly applied, most would agree: we recognize the physical aspects of our existence, like cells and DNA, as well as the mental aspects, like experience and ideas. Only the mentally ill person would deny that we are composed of physical stuff, but few are comfortable with the restrictive biological meaning of life put forth by biologists such as August Weismann (1834-1914)3-that the function of the body (soma) is to be the protector of the germ-cell line (gametes) so that a species can be perpetuated, ensuring survival. Surely there is more to our existence than to ensure the perpetuation of our gametes? Isn't that why we have God, music, love, and poetry, and suffering, disease, violence, and racism? How do genetic manipulation and designer genes fit into this equation?

From a naturalist point of view, positive and negative arguments can both be made for human genetic manipulation. Many biologists feel that, at least at this stage of human history, altering the germ-line of individuals, which would allow the passage of traits from that individual to his or her offspring, would probably not be wise considering there is no way to tell the long-term, evolutionary effects it will have.4 Many feel, however, that it is okay to alter somatic genomes so that disease-causing genes can have their effects removed. Examination of the literature seems to show that most biologists feel fairly confident of society's ability to regulate and control genetic manipulation.5 Some point to the 1978 Belmont Report, which distinguished ethical from unethical research practices in order to protect the research subject, as an example.6 The primary motivation for genetic manipulation among scientists is to see the alleviation of suffering.7

A question arises, however, when one attempts to define suffering. The case for genetic manipulation seems more obvious when we consider such painful and debilitating diseases as Tay-Sach's, or sickle-cell anemia, or even non-life threatening but life-altering diseases such as retinitis pigmentosa (which causes gradual disintegration of eyesight into blindness). But when we become capable of identifying genetic links to conditions such as baldness, tallness, intelligence, and obesity, the word suffering becomes more shadowy. Here a distinction between euphenics and eugenics8 starts to be less clear-where will the implications lead us? A return to the eugenics era, when sterilization in this country was mandated for "sexual perverts, drug fiends, drunkards, and epileptics," not to mention "imbeciles, idiots, convicted rapists, and habitual criminals"?9

From a more philosophical point of view, it is difficult to determine if genetic manipulation will somehow alter the dignity of humanity by usurping ontological conceptions we have about our existence. For instance, if I am a chronically depressed person-and by my depression am able to be moved into brilliance and so have made a notable and fruitful existence as a painter, thus contributing forever to human history and culture-who seeks gene therapy and becomes "cured" and now am happy, losing in the process a distinct genius in my work, where did the source of that genius lie? Was it a product of the natural components of my body, my genes, or was it something less tangible, within the realm of the enigmatic aesthetic? Some10 argue that if we begin to identify qualities we might say belong to the "soul" as purely physical traits, capable of alteration, we become trapped by a reductionist argument of biological determinism; trapped because we lose the meaning of mental aspects of existence, becoming nothing more than vertebrates participating in an endless cycle of biological perpetuation. This raises, to the philosopher at least, a question of teleology: does humanity have a special destiny, a special place within the universe? It seems that if life is reduced to genes, and "biology is destiny" as Sigmund Freud proclaimed,ll then what use is history, moral good, or life itself, if all we are to accomplish is procreation and survival, without embellishment? Little wonder there was a turn to existentialism in the beginning of this century. The philosopher must be concerned with how to preserve human dignity, meaning, and purpose, as we begin to meddle with things heretofore left to chance, destiny, and God.

What is The Impact on Society?

What did other people's deaths or a mother's love matter to me; what did his God or the lives people choose or the fate they think they elect matter to me when we're all elected by the same fate, me and billions of privileged people like him who also called themselves my brothers . . . [they] would all be condemned one day. . . . What would it matter. . . . ?
-Albert Camus, The Stranger

The freedom to make choices in North America is the highly prized legacy of our democracy. But should we be allowed to make choices that involve interfering with our genes? When would a decision to alter some component of a person be acceptable, and what kind of precedent would such changes set for society? Are human beings capable of making responsible decisions? Are we wise enough to restrain the power to alter life? What will be the basis for those decisions? What ethical system should we use? For millennia philosophers have debated over theoretical frameworks by which we can judge the worth, or goodness, of human actions. Never before, however, has society been confronted with such an urgent need to come to some general agreement over which ethical system to use, or the criteria we should adopt, when we make decisions about the right to choose to alter our genes. Can the law keep up with the progress?12 And who, in the end, will make those decisions?

The impact on society that new genetic insight into diseases has had is already apparent. In an interview with Vicki Quade, the editor of Human Rights magazine, attorney Theresa Morelli asserts that without legislative protection, those who are at risk of genetic disease, or who have a genetic disorder, will be uninsurable and forced onto Medicaid or welfare.l3 As an example of the power of insurance companies, there have been examples of HMOs telling parents that if they carry a fetus to term with a known genetic disease, they will not pay for the baby's medical expenses or for the pregnancy.l4 Most states do not have laws regarding genetic testing; Wisconsin was the first state to outlaw it.l5 If we give the power to insurance companies, who are concerned mainly with the economics, to make these precedent-setting decisions over good genes and bad genes, then could it be possible that someday those who carry the "bad" genes will be forced to change them via gene therapy? Maybe not forced, or culturally mandated, as in Brave New World, but forced in that it will become economically necessary, for both the individual and for the insurance companies? In other words, will we be left with no choice?
Following the same line of argument, if society makes these kinds of judgments under the pretext of economics, what can we say about the value of those who carry genetic disorders, and are either incapable or unwilling to change them? Should it be forced upon them? Should they be "terminated"? Should they be ignored, and left to brutal nature? Who should take care of them? If one can imagine this future, it seems highly likely that nobody would feel a need to value such individuals, because what makes such individuals different, in some ways disadvantaged, would be seen devoid of its humanity, would be seen as a blatant badge of defect in every biological and economical sense. Is this a slippery slope? No. One needs only to be reminded of Hitler's Nazi Germany. Furthermore, these kinds of attitudes lie dormant in everyday culture. When paging through a medical textbook, under headings like "deformity" and "defective," there are pictures of Down-syndrome adults, adults with hemophilia, children with sickle-cell anemia, thalidomide babies. The current critical issue of euthanasia is making it more socially acceptable to find reasons-practical, economic, moral, or otherwise-why someone with a disease should die. Society must remind itself of the not-too-distant jump from gene therapy to eugenics. Even those who argue that gene therapy should be done only when medically necessaryl6 should ask themselves "what do we mean by medically necessary?" "What are we saying about those individuals who carry genes that are bad enough to recommend changing?" What message will the medical community send to the insurance companies? Should doctors decide what are the good genes and what are the bad?

The person that does suffer from a genetic disorder, like Huntington's disease or retinitis pigmentosa, will pay no attention to these abstract arguments, however. That is because their concern is more pragmatic. The person with Huntington's disease wants to have control over his or her faculties, and the person with retinitis pigmentosa just wants to be able to have normal vision. There is no strength in adversity for most of these individuals-they want a normal life, and most of us would understand and accept what they mean by normal. Do they not have the right to choose? But how do we extend the definition of a normal life to those who want gene therapy for non-medical disorders, like baldness, tallness, intelligence, and obesity? If plastic surgery is socially acceptable, even desirable, for personal enhancement, then why not genetic enhancement? Do we not have the right to choose?

What Should be Done?

Every craft and every investigation, and likewise every action and decision, seems to aim at some good; hence the good has been well described as that at which everything aims. . . . Then surely knowledge of this good is also of great importance for the conduct of our lives, and if, like archers, we have a target to aim at, we are more likely to hit the right mark. If so, we should try to grasp . . . what the good is . . .
-Aristotle, Nicomachean Ethics

It is unlikely that we will ever be able to say with any certainty what should and shouldn't be done with the power to alter our genome. We are not, after all, God. What can be said, however, is that society needs to be aware of the issues, and not be content to let decisions be made on the basis of one particular directive, supported by one particular group. The stakes are too high, and the lessons of history too formidable. We need to continue the conversation, guided by an awareness of the issues. Scientists and philosophers can at least agree on the problems: how do we define a human being and where do genes fit into that definition; by what criteria is gene therapy warranted and how should we decide it; and without sacrificing human dignity and freedom, how should gene therapy be regulated in society and who should regulate it? By at least recognizing these problems, society has a target to aim at in its pursuit of principles. Awareness of our mistakes will also be a tempering force in the forging of a new genetic era. No critic, however, can stop the genetic revolution; nor can we deny the potential benefits to be obtained by it. Can we, however, make the right decisions? Will we aim for the highest good, however we define it, in our decisions? What kind of legacy will we leave for the future? That may be for them to judge, but it is for us to determine now.

Endnotes

  1. Interest in genetics goes back to ancient Greece, where a distinction was made between physical substance and the generative force. The preformation theory (a sperm or egg contains the preformed individuals of all succeeding generations) was dominant in the seventeenth century. William Harvey is credited with the first statement of epigenesis (an individual is derived from substances from both parents). Darwin set the foundation for modern genetics, with Origin of the Species, by recognizing that blending (a mixing of traits from both parents creating intermediate results) could not explain variation and diversity of species. From Gerald Audesirk and Teresa Audesirk, Biology: Life on Earth (3rd ed.; New York: Macmillan, 1993), 209; Bruce M. Carlson, Patten's Foundations of Embryology (6th ed.; New York: McGraw-Hill, 1996), 1-3; and William S. Klug and Michael R. Cummings, Concepts of Genetics (4th ed.; New York: Macmillan, 1994), 2-5, 51.

  2. Audesirk and Audesirk, Biology, 309-324; Klug and Cummings, Concepts, 569-589; and Kathryn L. McCance and Sue E. Huether, Pathophysiology: The Biologic Basis for Diseases in Adults and Children (2nd ed.; St. Louis, Mo: Mosby, 1994), 192.

  3. He made the distinction between soma and gametes a century ago (Carlson, Patten's Foundations, 3). Many scientists will speak of life within the context of this biologic determinism.

  4. Audesirk and Audesirk, Biology, 303; and "Changing Your Genes" (editorial), The Economist, in Biomedical Ethics: Opposing Viewpoints, ed. David Bender and Bruno Leone (San Diego, Ca.: Greenhaven, 1994), 273.

  5. One textbook states, "What, if any, are the rights and responsibilities of society in these decisions. . . . In a free society, probably the best solution is to give people the best information possible about their genetic constitution and that of their future children" (Audesirk and Audesirk, Biology, 326); another says, "Applied research in genetics has provided other medical benefits. . . . Human genetic engineering . . . is being used to alter the genetic constitutions of individuals harboring genetic defects and to correct such defects in the developing fetus. Although such processes present ethical questions, the ability to correct serious genetic errors in member of our species ensures that such approaches will become commonplace in the near future" (Klug and Cummings, Concepts, 13); and again, "Our society has repeatedly demonstrated that it can draw a line in biomedical research when necessary" (W. French Anderson, "Genetics and Human Malleability," Hastings Center Report, in Biomedical Ethics, ed. Bender and Leone, 276).

  6. Ibid.

  7. Audesirk and Audesirk, Biology, 309-326; Klug and Cummings, Concepts, 413-435.

  8. Eugenics, a termed coined in 1883 by Francis Galton (a cousin to Darwin), refers to artificial selection of human characteristics by controlling human matings, and restricting the reproduction of individuals with undesirable traits. It is used to describe Hitler's ideas for producing a superior race, and has a strongly negative connotation. Euphenics, a modern term, refers to medical and/or genetic intervention designed to reduce the impact of defective genotypes on individuals (Klug and Cummings, Concepts, 10).

  9. Ibid.

  10. Robert J. Nelson, "What is Life," Christian Social Action (Jan., 1991), in Biomedical Ethics, ed. Bender and Leone, 263-269.

  11. "Changing Your Genes," 271.

  12. "Although it has been said that scientific knowledge doubles every ten years, one estimate holds that the doubling time in genetics is less than five years." Klug and Cummings, Concepts, 1.

  13. Vicki Quade, "Protecting the Essence of Being," Human Rights (Winter, 1993) in Biomedical Ethics, ed. Bender and Leone, 288.

  14. Ibid.

  15. Ibid.

  16. Anderson, "Genetics and Human Malleability," 276-280.