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Opinion: Human Embryo and Gene Manipulation
by Ruth Hubbard
Ruth Hubbard is a professor of biology at Harvard University. She teaches and writes about interactions of science and society, particularly as they affect women. She is a member of the National Women’s Health Network and has collaborated with the Boston Women’s Health Book Collective on the forthcoming revision of Our Bodies, Ourselves.
The more sophisticated a technology and the more training and skill it requires, the more likely it is to be controlled by elites, to increase inequalities, and to reinforce hierarchies. Those who are able to use it of necessity know more about it, and hence, have more power over its use than the people on whom it is used. When thinking about medical technologies, we must also take into account that in this country most scientists and physicians are part of the social and economic elite. The great majority is male and white, and only a small minority comes from families whose income is below the median. 1 Therefore scientists and physicians are an elite not only in knowledge, but also in terms of the other variables that shape the pyramid of power in this society. Their clients in general are poorer than they are and have less access to the kinds of social resources that give people a measure of control over their lives. The benefits and risks of sophisticated medical technologies therefore cannot be assessed as though their use involved transactions among equals.
Problems of professional dominance and control are inherent in the use of any new and complicated technology, but they become particularly oppressive in some of the new reproductive technologies. For example, clients for in vitro fertilization are people who have been unable to conceive a child that is biologically their own, but are desperate to have one. In the case of embryo and genetic manipulations, the clients are prospective or actual parents who have reason to fear for the health of their child. Both groups are highly vulnerable. When they are offered technologies that are new and hence untried, the professional who advises them is the only expert—there are no “second opinions.” Professionals therefore function as both advocate and judge in decisions about appropriate therapy.
Test Tube Babies
Usually clients for this procedure are women who have already travelled a hard road filled with ups and downs of renewed hopes and frustrations as they have undergone prolonged, sometimes invasive, medical examinations, changes in sexual practices, hormone treatments, and often surgery. For many of them the defect that in vitro fertilization is intended to correct—blocked or otherwise damaged Fallopian tubes—is due to chronic pelvic inflammation, ironically the result of previous use of an IUD to avoid pregnancy. Some women who previously used IUDs on the advice of physicians who did not warn them about the possibility of these ill effects, now feel that since medical technology has brought them their tragedy, it owes them repair. Encouraged by physicians who are excited by the scientific and therapeutic potential of the new techniques, they seem to ignore the fact that they are putting renewed trust into the same profession that failed them before. Yet there is no reason why assurances of safety should be more reliable this time. Quite the contrary. Because so little is known about the intricacies of fertilization and embryonic development, “experts” are on even less firm ground when they try to assess the effects of intervening in these processes than when they try to foresee the consequences (and hence the safety) of using an IUD.
Physicians’ assurances that in vitro fertilization and reimplantation do not endanger the prospective child rest on their faith that if anything goes wrong during fertilization or early development, the fetus will abort spontaneously. But obviously this is not true when embryos are produced in the usual way, since some babies are born with genetic or developmental disabilities, although some abnormal embryos do indeed abort. There is no way to predict whether the situation will be similar or worse for embryos that result from in vitro fertilization, although it is not likely to be better.
Leslie and John Brown, the parents of the first “test-tube baby,” were required to consent in advance to an abortion if Dr. Steptoe, the British physician who together with Robert Edwards developed the procedure, found that the baby was going to be born abnormal.2 Steptoe and Edwards subsequently withdrew this requirement because it frightened too many of their clients. But it is also frightening that they thought it legitimate to exert that kind of control over their patients. Even now, when the technology has been in use for a few years, women have little say over the ways in which they are screened or in which the procedure takes place. Who is “permitted” to become a candidate for in vitro fertilization; what prior tests she must undergo; when, where, and how often she may try to become pregnant, are all under the control of the clinic or physician who performs the fertilization. Under present regulations in this country, it is even prescribed that the woman must be married and that her husband must be the sperm donor—facts that clearly are of no medical or scientific importance and ought not be the concern of the physician who does the procedure.
The methods developed for in vitro fertilization begin to lay the technical ground work for a range of possible manipulations of human eggs, sperm and early embryos, such as cloning, cell fusion and other means of genetic modification. All such procedures need not be dangerous in the best of possible worlds. However, in this real world, the power to initiate research and social programs and to determine their direction is vested in elites whose activities cannot be monitored adequately by the people who are most likely to suffer from them. Therefore experimentation that threatens to change reproduction in ways that will increase the power of “experts” over the day-to-day, and hitherto relatively private, practices of ordinary people, raises dangers even when it offers specific benefits to special groups with special needs.
Fetal and Genetic Therapy
Professional dominance is also involved in manipulations of embryos later in pregnancy. This can be seen in some publicized instances of what has come to be called “fetal therapy.” At present, “gene therapy” is not yet practiced, but human embryos have begun to be “treated” in other ways. Fetuses have had shunts implanted in the skull to relieve the excessive pressure of hydrocephalus (“water on the brain”). Others have had the effects of malformation of their urinary tracts relieved or repaired. These and similar instances of fetal surgery have been reported in the scientific literature and accounts have found their way into the news media. The procedures have had mixed results: some of the babies have died before birth or shortly thereafter, a few have clearly benefitted, and several have been born with multiple, and sometimes progressive, severe disabilities.3
From a biological point of view, it is not surprising that severe developmental problems often have multiple effects, since a great many processes occur simultaneously in a developing embryo. One particular disability, or group of disabilities, may be diagnosed during pregnancy and physicians may urge intervention—be it with drugs or surgery. In this situation, parents have little choice but to follow the doctors’ advice. When a physician detects a problem and suggests that it can be repaired, expectant parents of wanted children are enormously vulnerable. They are upset that something is amiss. They want their child and it may be too late to abort, or they may not want to. All the diagnostic and therapeutic techniques are new, so that second opinions are hard to come by and of questionable value.
Worst of all, in the present legal and medical climate, some prospective parents’ right to refuse intervention could come into question. Parents already have lost considerable rights to refuse therapy for their newborns and small children. If “fetal rights” gain legal standing, prospective parents could lose the right to refuse fetal therapy even before the practices have been widely accepted by the medical profession. Women are at a critical point at which a pregnant woman could be legally defined as an incubation chamber without her own right to bodily integrity. Surgery and other medical interventions could be mandated by joint decisions of physicians and judges.4 For example, Margery Shaw, an attorney, has stated that
once a pregnant woman has abandoned her right to abort and has decided to carry her fetus to term, she incurs a conditional prospective liability for negligent acts toward her fetus if it should be born alive. These acts could be considered negligent fetal abuse… Courts and legislatures… should… take all reasonable steps to insure that fetuses destined to be born alive are not handicapped mentally and physically by the negligent acts or omissions of others.5 (my emphasis).
Failure to intervene medically could be deemed such an “omission.”
Interestingly enough, some of the physicians most closely involved with fetal therapy have recently counselled that “Most defects are best treated after birth.”6 Reviewing the record to date, they urge extreme caution; but unfortunately this is not likely to be the end of fetal interventions. In an interview in a magazine for physicians, called Patient Care, Dr. Frigoletto, Chief of Maternal and Fetal Medicine at Boston Brigham and Women’s Hospital and one of the signers of the cautionary note, discusses enthusiastically innovations in the use of ultrasound for
“the monitoring of fetal well-being… It’s almost like going to nursery school to watch behavior of 3-year-olds. Eventually, we may be able to distinguish normative behavior for the fetus… That will help us to identify abnormal fetal development, perhaps early enough to correct the environment or treat the fetus in utero.”7
Let us remember that “the environment” happens to be a woman’s body. But that is not the only thing wrong with this prospect of fetus-watching. Considering the range of human variabilities, we can expect fetal development to vary. I find it chilling to anticipate the projection of standards for “normal” fetal development and the institution of “therapies” to bring deviations into line.
Some Social and Economic Ramifications
Another point to stress is that while fetuses with multiple defects, as well as younger and younger premature infants, are being rescued from death, this country continues to have one of the highest rates of infant deaths and illnesses among western, industrialized nations.8
The reasons for this are not medical, but stem from the extent of poverty and malnutrition. This country’s deplorable health statistics are due to the fact that an unnecessarily large proportion of babies are born prematurely or, though born at term, are too small and incompletely developed to survive or be healthy—many of them to poor, teen-aged mothers.9 Numerous social and economic measures could be instrumental in decreasing prematurity and infant death rates. It is a serious misuse of resources to push high-technology baby-saving while the health status of women and babies declines as a result of economic and social malpractices, including medical neglect.
A few words about gene therapy. It is new even on the drawing boards and does not yet exist in practice, but it could involve the development of techniques to introduce genetic material obtained by means of the new recombinant DNA technology into eggs or sperms, or into embryos, babies or, even, adults. Chemical measures are also being developed that could be used to change the genetic material of individuals in, hopefully, predictable ways.
As might be expected, gene therapy too will involve special risks in addition to the fact that it is entirely new and hence untried. For one thing, it increases an already excessive preoccupation with inherited disabilities at a time when environmental hazards to health are on the increase, and could be reduced through more adequate social policies. Also social applications of genetic selection have a dismal history in this country. Earlier in this century, discriminatory immigration and compulsory sterilization laws were enacted and enforced as part of a misconceived effort to improve the “genetic stock” of the American people.10 (See, for example, Barry Mehler’s “The New Eugenics” in this issue.) It is enormously important that the social consequences of trying to make decisions about what are “good” and “bad” genes be thoroughly examined and widely debated. Professionals, who have no more than the required technical expertise, must not be allowed to acquire the power to make and implement decisions about who is fit to be born.
Commercial Conflicts of Interest
The final issue I want to touch on concerns the social implications of. the commercialization of genetic technologies, even before there are products to sell. At present, just about everyone working on the science or applications of gene manipulations has a relationship with the new genetics industry—as owner, board member, scientific staff or consultant of a company. In the last few years, many new firms have sprung up with names like Gentech, Genex, Biogen, and so forth, that are owned as well as staffed by scientists. In addition, several multinational drug and chemical corporations have become involved in genetic engineering, such as Eli Lilly, Schering-Plough, Hoffmann-La Roche, Monsanto, and Dupont. Some of these firms have formed partnerships with the small, new companies; others have entered the field on their own. Major chemical firms are also making arrangements directly with universities whereby academic laboratories or departments work in close collaboration with them.11
The fact that genetic technology has become a major event on Wall Street has enormous, and I think detrimental, implications for people who may one day soon find that they, their embryos, or their children are candidates for “gene therapy.” Because of direct links with the industry, the very people who are engaged in the research and practice of the new technology will be among those who reap the profits. And since recent articles on the financial pages speak of a “Biotechnology Retrenchment,”12 the temptation to make overly optimistic claims increases.
Some scientists and entrepreneurs, as well as other observers, readily admit that scientific and medical claims already have been made with an eye on the stock market.13
But such exaggerated claims and promises hold great danger for ordinary people, who must rely on their physicians for expert advice. Most people are not ready to regard statement by scientists and physicians as skeptically as they would the assurances of representatives of the automobile industry with respect to safety.
Already the impartiality of scientific evidence offered by one of the erstwhile academic leaders and a Nobel Laureate, Walter Gilbert, has been challenged by the U.S. Solicitor General before the Supreme Court because Gilbert was one of the founders of Biogen.14 Patients cannot really be expected to look into the commercial affiliations of their physicians or to request to see their portfolios! This situation goes beyond previous ones in which physicians have been accused of conflicts of interest because of their links to the medical-industrial complex. In this case, so much prestige and money are involved that millionaires will quite literally be made (or unmade) overnight. Gene manipulation has been called the new gold rush. The trouble is that this time our bodies are the frontier.
At present, Biogen and Genentech are in a race to market human interferon, which they hope will be active against viral infections and possibly cancer, and are beginning tests on patients.15
There is always reason to worry about the fact that drug companies themselves are the ones to test and report favorably on their new products. In this case, the future of a new industry depends on the favorable outcome of clinical trials. There are enormous economic incentives for professionals with sizeable commercial interests to release overly optimistic reports about the benefits of these therapies. There have already been promises of cures for sickle cell anemia and cancer, as well as of genetically “improved” human beings, before any drugs or therapies are available. When they come into use, it will be a case of “Buyers Beware!” But unfortunately sick people, pregnant women, or parents of a child with a serious health problem are much more vulnerable and less able to look out for themselves than are buyers of new cars or of “scientifically improved” brands of toothpaste.
Educators, members of the press, and the public need to become more aware and sophisticated about these new technologies and about their social as well as their medical hazards. As scientists “for the people” one of our major tasks is to make people aware that they have a range of options when they confront the new biotechnologies, including the option to refuse. We must also fight so that pregnant women not lose this option to a wave of “fetal rights.” But no matter what we do, in this society intricate technologies will of necessity disempower people without special expertise. Only major social changes will change that.
- Vicente Navarro, Medicine Under Capitalism, New York: Prodist, 1976, p. 144.
- Leslie and John Brown with Sue Freeman, Our Miracle Called Louise, London: Magnum Books, 1979, p. 118.
- See, for example, Jason C. Birnholz and Frederic D. Frigoletto, “Antenatal Treatment of Hydrocephalus.” New England Journal of Medicine, vol. 303, 1981, pp. 1021-1023; Michael R. Harrison, Mitchell S. Golbus and Roy A. Filly, “Management of the Fetus With a Correctable Congenital Defect.” Journal of the American Medical Association, vol 246, 1981, pp. 774-777; Albert Rosenfeld, “The patient in the womb.” Science 82, Jan./Feb. 1982, pp. 18-24; Robin Marantz Henig, “Saving Babies Before Birth.” The New York Times Magazine, February 28, 1982.
- I discuss this situation more fully in a recent article entitled “Prenatal Diagnosis and Fetal Therapy: Legal and Policy Implications,” published, with footnotes by Janet Gallagher regarding some of the legal ramifications in the Women’s Rights Law Reporter, vol. 7, no. 3, Spring 1982, pp. 201-218. A case that involves a legally mandated Caesarian section is described in Watson A. Bowes and Brad Selegstad, “Fetal versus Maternal Rights: Medical and Legal Perspectives.” Obstetrics and Gynecology, vol. 58, 1981, pp. 209-214.
- Margery W. Shaw, “The Potential Plaintiff: Preconception and Prenatal Torts.” In Genetics and the Law II, edited by Aubrey Milunsky and George Annas, New York: Plenum Press, 1980, pp. 225-232: pp. 228-229. I wonder whether the current cuts in eligibility of pregnant women to receive food stamps and nutritional supplements under the W.I.C. program count as “omissions of others.”
- Michael R. Harrison, Roy A. Filly, Mitchell S. Golbus et al., “Fetal Treatment 1982.” New England Journal of Medicine, vol. 307, 1982, pp. 1651-1652.
- “Today’s view in maternal and fetal medicine.” Patient Care, January 15, 1983, pp. 105-121: p. 105.
- 1983 World Almanac, pp. 497-582. Currently, U.S. infant mortality rates (14.0 per 1000 live births) are nearly twice those in Sweden (7.7) and higher than those of all but a few western nations.
- Nancy Milio, Promoting Health Through Public Policy, Philadelphia: F.A. Davis Co., 1981, pp. 21-22; Melvin H. Rudov and Nancy Santangelo, Health Status of Minorities and Low-Income Groups, U.S. Dept. of Health, Education and Welfare, Publication No. (HRA) 79-627, 1979. A recent article in The Boston Globe (Feb. 14, 1983) that ran under the headline “Survey cites rise in infant mortality in depressed areas” cites the chief of maternal and infant health for the Michigan Department of Public Health as saying “that the 1980-81 period in Michigan saw ‘one of the greatest increases in infant mortality since World War II’… the group showing the biggest increase in deaths is babies under 28 days of age. Two-thirds of these deaths are related to low birth weight.”
- This history is described in Mark. H. Haller, Eugenics: Hereditarian Attitudes in American Thought, New Brunswick, N.H.: Rutgers Univ. Press, 1963; and in Kenneth M. Ludmerer, Genetics and American Society, Baltimore: Johns Hopkins Univ. Press, 1972. The compulsory sterilization law in California was not repealed until 1980 and sterilization laws for purposes of genetic “betterment” are still on the books in some twenty states.
- For example, see Kathy Yih, “Biotechnology Becomes Big Business.” Science for the People, vol. 12, no. 5, Sept./Oct. 1980, pp. 5-8; a table summarizing the “biobusiness,” run under the heading, “Where the biobucks are,” in the Business Section of The Boston Globe, Nov. 16, 1982; Barbara J. Culliton, “The Academic-Industrial Complex.” Science, vol. 216, 1982, pp. 960-962; Barbara J. Culliton, “The Hoechst Department at Mass General.” op. cit., pp. 1200-1203; “Monsanto-school announce pact” in The Boston Globe, June 4, 1982. The international picture is described in a series of articles run under the heading, ”The biology business,” in the British science weekly, Nature, vol. 283, 1980, pp. 122-131.
- “Biotechnology Retrenchment,” front page story in the business section of The New York Times, Feb. 19, 1983, reprinted Feb. 22 as a lead article in the business and financial section of the International Herald Tribune.
- Arnold S. Reiman, “The New Medical-Industrial Complex.” New England Journal of Medicine, vol. 303, 1980,963 -970; Barbara J. Culliton, “Biomedical Research Enters the Market Place.” New England Journal of Medicine, vol. 304, 1981, pp. 1195-1201; Nicholas Wade, “Recombinant DNA: Warming Up for Big Payoff.” Science, vol. 206, 1979, pp. 663-665; Nicholas Wade, “Cloning Gold Rush Turns Basic Biology into Big Business.” Science, vol. 208, 1980, pp. 688-692.
- Wade, “Cloning Goid Rush… “, p. 689; Culliton, “Biomedical Research Enters the Marketplace,” p. 1199. Gilbert has since resigned his tenured professorship at Harvard to become chief executive officer of Biogen.
- David Dickson, “Deaths Halt Interferon Trials in France.” Science, vol. 218, 1982, p. 772; “Biotechnology Retrenchment,” New York Times.