Designer Genes1: Some Ethical Issues
Matthew A. Cook
Genetic engineering excites emotions among religious leaders and ethicists. Many of the articles and books that are being produced follow one of two patterns. Either they present it under the overcast sky of “greed and gloom” or they present it amidst the glowing aura of “gee whiz.”2
Regardless of one’s emotional response, genetic engineering may be the crucial issue for the Church to address in the twenty-first century.3 This is a reasonable prediction, for there is a growing list of maladies and calamities that have been found to be genetically related, including many of the most dreaded diseases of our time, such as Huntington’s, sickle-cell anemia, muscular dystrophy, diabetes, heart disease and its antecedents, arthritis, cystic fibrosis and various forms of cancer. In addition, there are a host of lesser-known but seriouseven deadlyailments that have a genetic component.
Should not the Church take a stand for the elimination of these diseases? By what means and for what purpose are these diseases to be eliminated? These are the crucial questions.
To begin this discussion I must define some terms. Then I will discuss three of the techniques of genetic manipulation: gene therapy, germ-line manipulation and eugenics.
A gene is defined as a particular nucleotide sequence. This sequence dictates the particular protein produced that (usually) is the significant element in altering the biological characteristics of an organism. It works like this: DNA is made up of building blocks (nucleotides); these nucleotides bond with specific amino acids; the order of the nucleotides (a gene) determines the order of the amino acids (the protein). Genetic manipulation is all about changing the order of the nucleotides so that a different effect is obtained in the body.4
Positive genetic manipulation is the use of genetic techniques to accomplish some improvement in the individual or the human race as a whole. It has been called progressive eugenics because the scientist (or society) is viewed as making progress through the use of genetic manipulation.5
Negative genetic manipulation does not indicate a negative assessment of genetics at all. Rather, it is the use of genetic techniques to repair or prevent some misfortune, some defect or some disease from occurring. In this regard it has been called preventive eugenics.6
Unfortunately, there is no clear dividing line between positive and negative categories, even though much discussion is carried on using these terms. Consider what the distinction is. Either the dividing line between these two goals is the mean (average) of some people (hence, there is one objective standard by which all people are measured) or it is different for every person. If the mean is the dividing line then one faces the thorny problem of knowing what constituents one should use for averaging. Perhaps one should take the average of all Mensa members, or the average of everyone who has achieved a Ph.D., or the average of everyone who makes more than $100,000 per year, etc. This “averaging” is implicit in some of the literature. Consider the following definition of a mutation: “an alteration of nucleotide sequence.”7 But everyone’s nucleotide sequence is different!
Even if we knew what was most common we would not know (except through society’s judgment) which way is up and which way is down. In effect there is no scientific way of drawing a clear line between positive and negative genetic manipulation. This inability should induce caution and continued reflection on the question, “Toward what end is one using genetic manipulation?”
If no one can define a universal standard of the correct or best nucleotide sequence (read “body”)and I doubt they canthen one is left with an individualistic line. This line is now legitimate only for persons to apply to themselves and is not legitimate for any person to apply to any other person. Without an objective standard, no person can say that another person does not measure up because they have not answered the more basic question: measure up to what? No hierarchy can impose legitimate rules for, say, nonvoluntary sterilization or the like. I am advocating a clear plurality of the gene pool, an unashamed diversity in the human race that can be expected from our creative God.
It is possible, of course, that the person in favor of positive genetic manipulation could urge us to raise the overall average of our population. But which way is up? Some may value winning the Olympics; others may value a small physique. Some may value individuals with great academic potential; others may value individuals who remain in the community to improve it. Some may like a slim waist; others may value enough girth to endure a more difficult life. Each society may have different criteria of perfection.
Genetic engineering, therefore, should be treated like any other medical advance: to be accepted or rejected by the patient in question. In genetic engineering, I am pro-choice, but not like the pro-choice camp of abortion. In the abortion issue, pro-choice means one person’s choice produces the death of another. I advocate each individual having the privilege to chose or reject genetic therapy based on his or her culture or circumstances. Already from this discussion I have purposefully prejudiced the case of whether or not to accept some of the options yet to be presented.
Three Techniques of Genetic Manipulation
1. Human Gene Therapy
Human gene therapy is intended to cure a genetic disease in a specific body tissue.9 This runs the gamut of applications, from treating an infant’s hereditary disorder with fetal tissue to changing a cancer cell so that it produces its own anti-tumor.
In fact, the two examples just cited have been performed recently. The infant in question was born in 1990 to a couple who had lost two children to Hurler Syndrome, a genetic abnormality that deprives the body of a single critical enzyme, producing skeletal problems and severe mental retardation.10 The newborn was also deficient in the necessary enzyme, indicating Hurler Syndrome. Dr. Esmail Zanjani obtained tissue recovered from an aborted fetus and injected it into the infant. A magazine article on the procedure later reported that “Five to 10 percent of the child’s blood-making cells are descendants of the transplanted cells.”11 While the final results are not in, there is hope that this child may not develop the symptoms associated with Hurler Syndrome.
The second example occurred in 1991. Dr. Steven Rosenberg injected into a melanoma cancer patient a cell containing the gene that promotes an anti-tumor hormone called tumor necrosis factor (TNF). Because the cell had earlier been extracted from the very same patient, it was fully compatible with the surrounding cellsexcept that it contained the altered gene. The results are not yet known.12
The argument for this technique of genetic manipulation is strong: We heal individuals by using drugs, machines and operations; why not also use genetic means? It could be seen as an extension of drugs, since in many cases the body is in need of a particular hormone, enzyme or other chemical compound that physicians are unable to supply from the outside. Through gene therapy, they are able to supply it “from the inside,” i.e., they are able to manipulate a cell so that it produces the needed chemical while resident in the patient’s body. This technique can be seen as an extension of the healing art of the physician.
The arguments against human gene therapy are common to both this technique and one which will be discussed later:
(1) Is this “playing God”? No, this is no more “playing God” than injecting an antibiotic for pneumonia is “playing God.”
(2) Is there a danger that one of these artificially created molecules will escape and create an epidemic of catastrophic proportions? (In the literature this is referred to as the “Andromeda Strain” scenario.) That is a possibility, though it is highly unlikely. Researchers are confident that current containment methods are sufficient to make the risk worthwhile.
(3) Does this technology sometimes require embryo research or tissue from embryos? Certainly, sometimes embryo tissue is used.13 And this does present a significant ethical problem for the technique.
The couple whose infant was treated with fetal tissue viewed the embryo from whom the tissue was taken as already dead, whether or not the medical procedure was performed. Their doctor even said, “I know it’s crude to say itone life to save five, if successful.” They do not consider the future use of that tissue as a driving factor toward increasing the number of abortions. The important element from this is that another child (or more than one) will live.
I wonder if perhaps they are correct. Could tissue use possibly influence potential abortion clients toward abortion? Not likely. Would not this use of the tissue be salvaging at least some good from an otherwise horrible situation? Yes. But the use of fetal tissue may influence legislators or lobbyists in any future debates over the legalization of abortion.
Consider a future scenario where aborted fetal tissue is regularly used for gene therapy and legislation is proposed to outlaw abortion. Not only would “pro-choice” advocates be as vocal as ever, but medical advocates would be just as vocaland with a stronger argument than ever before: that abortions can save lives! For this reason, I do not advocate using embryonic or fetal tissue for genetic therapy.
On the other hand, shall we just stand by and let a Hurler Syndrome baby die? Not at all; there are other options. Researchers are now able to remove tissue from a patient, genetically alter it, grow more cells in the lab, and then reinject the tissue into the patient’s body.14 A group of scientists in Ohio has even assembled an artificial human chromosome for more efficient delivery of therapeutic genes to a patient’s cells.15 There are applications of gene therapy where fetal tissue is not involved at all.16
I have only mentioned negative or preventive gene therapy to this point. Positive or progressive gene therapy can take the form of altering the genes of an individual to improve that person beyond the norm. This application has not received much effort because the effect would exist only for that person; there would be no lasting improvement in the human gene pool (that is part of a technique we will look at later).
Discussions of positive gene therapy have typically been in the context of inappropriate exploitation or manipulation. Examples could include an athlete trying to become a world-class sprinter by taking steroids, or a country trying to win an Olympic basketball championship by “growing” their own team through regular injections of height hormones. Perhaps another application would be to “trick” some genes into thinking that the body is younger than it is so that the cells of a seventy-year-old begin repairing and reproducing themselves at the rate of a twenty-year-old. These examples play with nature for personal advantage. They represent a contemporary form of the self-aggrandizement the Bible so frequently characterizes as sin (e.g., in 1 Chronicles 21 when David commanded a census to be taken and Acts 8:9-25 which relates the incident of Simon the magician).
2. Human Germ-line Research
Lewis P. Bird argues, “If it is biologically and morally permissible to cure diabetes in a patient, why is it somehow inherently immoral to cure such a disease in one’s offspring?”17 Germ-line research would result in changing the genetic code of an individual so that his natural descendants would also feel the effects of that change. This involves rearranging the elements of the DNA so that they produce the appropriate proteins for the desired effect. This was not possible until a big breakthrough came in the 1970s at CalTech, where, according to Dennis Chamberland, “One machine automatically identified the sequence of cellular amino acids, spelling out the DNA code of the particular gene. Another machine assembled artificial genes piece by piece.”18
Germ-line research is available for either negative or positive genetic manipulation. Negatively, it could be used as Lewis Bird advocates, to engineer out “defects” from the human genetic pool. Positively, it could be used to engineer “advances” in humanitydesirable traits such as intelligence, height and hair color. It could even develop potentially necessary traits, such as resistance to UV radiation.
The argument for germ-line research follows that of Lewis Bird: If we can reduce the genetic load of imperfections on our descendants then we have an obligation to do that very thing. The possibilities are awe-inspiring. The potential before us has to do with improving ourselvesand not just ourselves, but all of our descendants. Each of us wants to make a contribution for the good of society and our progeny. Here is a possibility to do that very thing: to improve the lot of those who come after us, to raise their life above the suffering of our own, to eliminate the pain of genetic disease, to raise our race to a new level of existence. That seems to be a worthy endeavor.
The main argument against germ-line research is that most of the underlying genetic factors for genetic diseases are polygenetic in origin.19 Beyond that, this technique does not take into account the interaction between nature and nurture influences.20 Stephen Stich, as well as many other researchers, points out that only to a very limited extent do we “understand how nature and nurture conspire to produce complex mental and behavioral traits.”21 That same author states the unreasonableness of trying to engineer in or out personality traits.
Stich contends that many characteristics fall into this category: success, intelligence, ability, feeblemindedness, criminality.23 But this complexity is not limited to lifestyle characteristics; as I indicated above, even the so-called genetic diseases are often the result of multi-genetic effects.
A second argument against this technique is that the extent to which we are pursuing improvement will skew our understanding of children. Allen Verhey has said this very well:
“Such utilitarian approaches may be fine for cows and corn,” comments John Kilner, “but human beings, made in the image of God, have a God-given dignity that prevents us from regarding other people merely as means to fulfill our desires.”25
A third argument against this technique is that progress rarely finds itself satisfied. This is a form of the practical “slippery slope” argument.26 First, although technologies are initially introduced to “increase our options,” they can quickly become socially enforced. Consider the automobile. At first it was a mere convenience, but now it is inconceivable to maneuver through many of our lives without one. Second, although technologies are introduced to make things we want, they seldom satisfy our wants. Although the car is faster than the horse, we want even faster cars. Even though genetic manipulation may eliminate some diseases, we might want to use it to move man toward “perfection.” Third, although technology has brought good and significant benefits, it can be used, in Allen Verhey’s words, for “greed and pride and envy.”27
A fourth argument against this technique is that it involves experimentation on human fetuses and experimental techniques of in vitro fertilization. While in vitro fertilization is not bad in itself it is unlikely that germ-line research can be introduced through in vitro fertilization without a significant number of trials and failures, resulting in aborted fetuses. Listen to the process as described by Jonathan King:
Unfortunately, the process involves many trials using embryos that were only partially successful and must be destroyed or using parts of embryos that are destroyed in the process. Similar issues affect cloning:
This in vitro abortion is unacceptable. My understanding of the reproductive process is that life begins at conception. That means that the image of God and the soul are already resident. God makes clear His demand to protect those who are created in His image (Genesis 9:6).
There are too many detrimental possibilities with this technique to warrant an enthusiastic response. Neither negative germ-line research nor positive germ-line research offer much promise. Certainly the positive goal must be eschewed for the social implications and the difficulty of defining how the genetic change can be complemented by the environmental change. Even if the negative goal may at some future time be shown to offer hope of eliminating some disease through minimal manipulation it still presents too many deleterious side effects and requires research methods which are too abhorrent to warrant the benefit.30 I agree with 1980 Nobel laureate Jean Dausset: “Thus as things stand at present, germ-line therapy must be strictly banned.”31
Eugenics is described as the selection and recombination of genes already existing in the human gene pool. Negative eugenics aims at removing the deleterious genes; positive or progressive eugenics tries to spread superior genes.32 The negative option can be accomplished through a number of means: sterilization of the retarded (either forced or voluntary); amniocentesis followed by abortion of “defective” fetuses; and genetic screening programs, resulting in reproductive abstinence of those found with genetic “defects.”
Positive eugenics is accomplished through the widespread use of those persons’ genes who happen to have received more than their share of “valuable” genes. It is in this context that H.J. Muller is often mentioned. Muller, a Nobel laureate, proposed a sperm bank for Nobel laureates. From that bank any female desiring to improve the genetic pool of the human race could be artificially inseminated.33
The main argument for eugenics is to spread the influence of advanced genes or eliminate the spread of “defective” genes through a social selection that will pick up where natural selection has been circumvented. As Muller stated his “ethics of genetic duty”:
Because the negative and positive forms of this technique form somewhat different problems, I will deal with them separately.
The first argument against positive eugenics is that it promotes a distorted purpose for children. Although a firm definition cannot be placed on the purpose for children I contend that their purpose is not that of pawns for the improvement of the race. They are not objects, even for the spread of “good” genes. They are not to be “perfect.”
When speaking of high-tech methods of conception that are frequently necessary in eugenics, Christian ethicist Gilbert Meilaender says, “In general, and even entirely apart from the use of donated sperm or eggs, it becomes increasingly difficulty to think of the child as a gift and not a product.”35 The “product” model is directly antithetical to Psalm 127:3-5.
The second argument against positive eugenics is the intermixture between the influences of nature and nurture to produce desirable effects. There can be no guarantee that our work in eugenics will produce anything like the desired result.
The arguments against negative eugenics are not against the goal but against some of the methods that are used to accomplish the task. I agree that genetic counseling should be available to every individual. But social pressure or forced sterilization is inappropriate because that would impose someone else’s criteria of what is “normal” and what is “deficient” upon free individuals. Another inappropriate method of implementation of this technique is amniocentesis with abortion of “defective” fetuses. It is in this context that Verhey says we end up with either a “perfect child or a dead child.”36
This initial investigation into genetic engineering reveals some significant problems with many areas of application. There are four great difficulties with genetic engineering:
1. Sometimes one person (or group) tries to define the line between negative and positive genetic manipulation, in effect determining who is “deficient” and who is “sufficient.” These kinds of labels are inappropriate for both our pluralistic society and a Christian conception of the image of God resident in an individual (Genesis 1:26, 27).
2. Any attempt to engineer “out” or “in” a certain characteristic is often complicated by the difficult interaction between genetics and the environment.
3. Many of the techniques necessary to conduct genetic research and treatment are unethical (by my standards). The end does not justify the means because those who bear the harm (usually aborted fetuses) have no hope of benefit from the techniques.
4. The goals toward which genetic engineering is striving are sometimes inappropriate.
Genetic manipulation will become more common with the advance of science. The Human Genome Project37 (funded by the federal government) is currently mapping the 3 billion units of DNA that constitute the genetic programming of human cells.38 Their purpose is to provide a comprehensive mapping of genes. There are competitive commercial ventures paralleling the Genome Project. Their purpose is to prepare and market genetic therapy to change one’s genetic code.39 Sometimes those techniques will be useful, but the Christian community must come to some significant and difficult conclusions about the value of individuals based solely on the presence of the image of God (regardless of their intellectual, athletic or social abilities), the rights of individuals to make choices for themselves and the complex implications of genetic manipulation.
Genetic Manipulation: A Summary of Techniques Discussed
(Those portions this author finds as unacceptable are italicized.)
1 Taken from Allen Verhey, “The Morality of Genetic Engineering,” Christian Scholar’s Review 14 (1985): 125, hereafter cited MG.
2 Stephen P. Stick, “The Rewards and Risks of Studying Genes,” The Hastings Center Report 16 No.2 (April 1986): 39, hereafter cited RRSG.
3 This is a paraphrase of a comment made by John S. Feinberg in personal conversation with the author.
4 Lee Ehrman and Joe Grossfield, et al., “The Supreme Court and Patenting Life,” The Hastings Center Report 10 (October 1980): 10, hereafter cited SCPL.
5 Paul Ramsey, “Moral and Religious Implications of Genetic Control,” in On Moral Medicine: Theological Perspectives in Medical Ethics, ed. Stephen E. Lammers and Allen Verey (Grand Rapids, MI: Eerdmans, 1987), 370, hereafter cited MRIGC.
6 Ibid., 370.
7 Ehrman and Grossfield, SCPL, 10.
8 Jonathan King, “Prospects and Hazards of New Genetic Technologies,” Christianity and Crisis: A Christian Journal of Opinion 39 (October 15, 1979): 251, hereafter cited PHNGT.
9 Ronald S. Cole-Turner, “Is Genetic Engineering Co-creation?” Theology Today 44 (October 1987): 340.
10 The Chicago Tribune, Associated Press Story, 10 October 1991. Sec. 1. Page 3.
12 Anastasia Toufexis, Time, 21 October 1991.
13 See above, the example of the child with Hurler Syndrome. The article was written in the context of the parents being called to testify at congressional hearings in April, 1991 on the subject of fetal tissue research.
14 Roberta Hubbord and John Ettorre, “Hopeful Expression: In Gene Therapy, Researchers Probe the Potential of a Breakthrough Medical Treatment. Their Aim Is Nothing Less Than the Conquest of Genetically Based Diseases,” CWRU [a publication of Case Western Reserve University] (February 1995): 10.
15 Kristin Ohlson, “Divide and Conquer,” CWRU (May 1998): 14.
16 See above, where the cancer patient was injected with his own genetically altered cells.
17 Lewis Bird, “Universal Principles of Biomedical Ethics and Their Application to Gene-splicing,” Perspectives on Science and Christian Faith: Journal of the American Scientific Affiliation 41 (June 1989): 85.
18 Dennis Chamberland, “Genetic Engineering: Promise and Threat,” Christianity Today 30:2 (February 7, 1986): 24.
19 Marc Lappe, “The Predictive Power of the New Genetics,” The Hastings Center Report 14 (October 1984): 19.
20 Cloning cultural heroes forces the same issue. “They, like us, were shaped by genetics and environment alike, with the spiritual capacity to evaluate, disregard, and at times to overcome either or both.” John Kilner, “Stop Cloning Around,” Christianity Today, 41 (28 April 1997), 11, hereafter cited SCA.
21 Stick, RRSG,40.
22 Ibid., 41.
24 Verhey, MG, 136-7.
25 Kilner, SCA, 10.
26 This argument and analogy is largely taken from Verhey, 134.
27 Ibid., 134.
28 King, PHNGT, 251.
29 Kilner, SCA, 10.
30 Note also the discussion by Allen Verhey on compensatory justice. With germ-line research those who suffer the greatest risk have no hope of reaping any of the benefit for they are dead. Verhey, 128-132.
31 Jean Dausset, “Scientific Knowledge and Human Dignity,” Unesco Courier, 47 (September 1994), 10.
32 Charles E. Curran, “Moral Theology and Genetics,” in On Moral Medicine: Theological Perspectives in Medical Ethics, ed. Stephen E. Lammers and Allen Verhey (Grand Rapids, MI: Eerdmans, 1987), 373.
33 Ramsey, MRIGC, 368.
34 H. J. Muller, Man’s Future Birthright. (University of New Hampshire, Feb. 1958), 18. As quoted in Ramsey, 371.
35 Gilbert Meilaender, “Biotech Babies,” Christianity Today, 42 (7 December 1998), 58.
36 Verhey, MG, 136.
37 Nicholas Wade, “It’s a Three Legged Race to Decipher the Human Genome,” New York Times, 23 June 1998, F3.
38 Nicholas Wade, “In Genome Race, Government Vows to Move up Finish,” New York Times, 15 September 1998, F3.
39 Nicholas Wade, “New Company Joins Race to Sequence Human Genome,” New York Times, 18 August 1998, F6.
Listening to God for Life and Ministry, David John Smith
Being Filled with the Holy Spirit, Eldon Woodcock
Contextualization: The Continuing Search for Relevance, Richard Pease
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©2006 by K. Neill Foster