Can we still talk? Experimenting on human embryos
Susan EllisLater this month, the National Institutes of Health (NIH) will decide how to review and possibly fund experiments on human embryos - embryos that in some cases will be subsequently destroyed. In our view the issue of human embryo research - which was authorized by Congress last year but not widely understood - needs to be opened to further public discussion.
For a variety of reasons, a full and informed debate did not take place in the public meetings conducted by NIH earlier this year. In those meetings, participants were allotted ten minutes to offer testimony and field questions. Many of those who spoke, some of whom were reputable scientists, passionately opposed human embryo research. But the meeting transcripts suggest that it was very difficult for some panel members to grasp that there are intelligent people who believe that human embryos are human beings and thus, no matter what the potential benefits, ought not be used as research subjects. When one panel member inquired about the panel's responsibility to consider opposition to embryo research, panel chairman Dr. Stephen Muller responded, "I don't think we have to take a view into account that there should be no human embryo research, period." In other words, the most important question the NIH panel should have been asked to consider - namely, whether public monies should support such experimentation at all - had been ruled out of bounds long before the public was given a chance to participate in the process.
A little history is in order. In September an ad hoc advisory panel to NIH director Dr. Harold Varmus released a draft of its report on human embryo research. The panel recommended that, subject to rigorous guidelines, certain areas of human embryo research warranted approval for federal funding, provided they were well-designed studies of therapeutic value. As we shall shortly explain, there are a multitude of so-called "spare" embryos left over from the treatment cycles of infertile women. Many people think that it would be better to use these never-to-be-implanted embryos for research than to discard them, as is now the practice. Moreover, for what it believed were sound scientific reasons, the panel included an even more controversial recommendation. It suggested that federal funding be made available for the creation of embryos intended only for research purposes, that is, not "left over" from infertility treatments.
The idea that public funds might support the creation of embryos for research tripped an alarm awakening many people to the fact that we have already sleepwalked across a dividing line in human history. Judging from public reaction, many Americans did not realize that Congress (and not the NIH or any other government body) had already legitimized human embryo research.
The history of that development is somewhat complicated. In 1974, when in vitro fertilization was in its infancy and the kind of embryo research we are considering today wasn't yet conceived, the National Commission for the Protection of Research Subjects of Biomedical and Behavioral Research recommended the creation of an Ethics Advisory Board (EAB). The board, which was active from 1978-80, was asked to consider the ethics of in vitro fertilization (IVF) and embryo transfer. At that time, the EAB concluded that IVF was ethically acceptable and that given certain guidelines, research on IVF should be federally funded. These guidelines required the approval of such research by the EAB itself. However, under Ronald Reagan the EAB was never called into session and no review of applications for IVF research was allowed to go forward at the NIH. That produced a de facto moratorium on publicly funded embryo research. In the vacuum created by the EAB's inaction, the private sector had the ethical green light to move forward with IVF and an essentially unregulated and very lucrative industry was born.
As the number of privately funded advances in reproductive technologies increased in the 1980s, Congress decided it was necessary for the federal government to get back into the IVF research arena. Legally, Congress had to either charter a new EAB or nullify the requirement for the existence of the long dormant board. In the NIH Revitalization Act, which became law in June 1993, Congress chose to bypass the need for EAB review on proposals involving embryo research. Consequently, the government was in the human embryo research business, and no one seemed to notice.
To their credit, NIH Director Varmus and his advisory committee decided to delay the review of research protocols using human embryos until the moral and ethical issues were thoroughly examined and appropriate guidelines set. With this task in mind, a group of nineteen individuals, known collectively as the Human Embryo Research Panel (HERP), was selected. Convening last February, the HERP's charge was to decide, taking into consideration both scientific and ethical concerns, which areas of human embryo research should receive federal support. This is the group that issued the controversial report in September.
Were it not for the use of in vitro fertilization as a treatment of infertility in the first place, the need, or at least the pressure, to provide government funding for human embryo research would not have arisen - at least not yet. In vitro fertilization refers to any fertilization of an egg outside the body of a woman. In this process, the female donor is administered a drug that hyper-stimulates her ovaries, causing her to produce anywhere from 3-15 mature eggs. Invasive procedures are then used to harvest the eggs, after which they are all fertilized with sperm from her husband or another male donor. Up to three embryos are then selected for transfer to the woman's uterus, while the remainder of the embryos are frozen. Though these procedures are risky, it is a risk the woman has consented to in exchange, she hopes, for a successful pregnancy. There is at best, only a 15 percent chance that one of the three embryos will result in a live birth. If the embryos do not implant or the pregnancy does not go to full term, the woman can try again, using some of the previously frozen embryos. However, if the unused embryos are not needed for another attempt at implantation, patients have the option of paying about $100 a year to keep them in a state of suspended animation, or they can elect to have them discarded.
Ronald Green, an ethicist and panel member, argued that since in vitro fertilizations are performed in such vast numbers, we have a responsibility to make sure that the procedure is as safe and efficacious as possible. In its present state, IVF as a treatment for infertility is both costly and fraught with physical and psychological risks. Indeed, one woman who underwent infertility treatment testified before the panel that IVF is an industry which exacts a high financial price for racheting up unrealistic hopes and thus should not be funded at all. On the other hand, another woman testified that being deprived of the birthing experience was for her a terrible wound. Does, however, such a psychological wound justify a morally problematic treatment that will pursue at public cost?
It is hard to imagine that the clock will be turned back on IVF. Consequently, a large number of embryos, which can either be discarded or used for research purposes, and then discarded, will continue to be produced. It is often argued with some cogency that in light of the substantial benefits that could come from doing research on these never-to-be-implanted embryos, it is nothing less than a sin not to use them for research purposes. If, however, we are willing to do research upon embryos solely because they are no longer intended for implantation, then we are in effect stating that the moral status of the embryo does not depend upon its intrinsic properties, but rather upon the intentions others have for it. Some philosophers assert that slippery slopes never materialize. Yet from the vantage point of those who opposed IVF to begin with, indeed from the vantage point of the Catholic church, the argument that we are now morally obliged to do research on spare embryos is proof positive that some positions do in fact come with ice and runners.
Since the narrow charge of the panel was not to decide whether or not to approve human embryo research but only to recommend what kind, it had to consider what constituted a good research proposal. Evidence was presented that there might be reason to believe that eggs from an infertile woman might not be healthy enough to use in certain types of research protocols, either because her infertility might be the result of diseased ovaries or eggs in the first place, or because of damage to the eggs from fertility drugs. Scarcity of "spare" embryos was another concern. Therefore, the panel, in its efforts to insure the highest quality research, recommended that in very circumscribed situations, eggs could be fertilized solely for research purposes. In other words, the embryos produced for research will not be "spare," for there never will have been any intent to implant them.
Approval of the production of embryos solely for research purposes is thus the panel's most stunning proposal. Many of the people who yawned over the discussion of IVF exploded upon hearing the news. But once again, if it is morally meet to experiment upon embryos no longer intended for implantation, then there must not be any morally compelling reason to protect embryos, period. Or again, if one cluster of embryos is not entitled to the rights and protections of personhood, why should another be?
Accept it or not, the panel argued that, up until fourteen days, and with the occurrence of what is known as the primitive streak, embryos - or as they are tellingly referred to in the report, pre-embryos - are morally acceptable subjects for research. In an essay in the Wall Street Journal (October 27), the Reverend Richard John Neuhaus excoriated the panel for drawing what he took to be an arbitrary and self-serving demarcation line through the continuum of life. The panel, however, reasoned, as have many other committees dealing With the question of human embryo research, that at fourteen days "... individuation, bodily form, and nervous system development have their beginning, considerations that greatly enhance the embryo's moral claims upon us." Besides marking the beginnings of the nervous system, no twinning can occur after this stage.
One of the people who testified at the public sessions questioned the panel's reasoning on this issue. Dr. Dianne Irving, former research biochemist with a doctoral degree in bioethics from Georgetown University, wrote her dissertation on the ethics of experimenting with surplus IVF human embryos. She told the panel that during the initial stages of her research she also had argued for personhood at fourteen days. One of the criteria she, as well as the panel, had used in defense of this limit was the belief that not all the cells prior to this stage are committed to the embryo itself. Cells on the outer layer are destined to give rise to placental tissue, while only those in the inner layer constitute the true embryo; thus, the embryo at this stage is not a coherent, organized entity or individual. However, after an extensive review of the literature, Irving concluded that, in fact, these layers are not at all distinct, and that "there is a constant interaction between all of these cells and all of these layers from fertilization on." The distinction between a pre-embryo and an embryo, for her, became a false one.
The panel also argued that sometime before fourteen days, the pre-embryo can twin or can fuse with another embryo, and therefore does not have an individual identity. However, the ability to twin or fuse ceases well before the first week after fertilization and therefore cannot be used to justify a fourteen-day limit. In fact, of eleven countries surveyed by the NIH with regard to their policies on human embryo research, only four allow research up to fourteen days. Four others have a limit at three to five days, and a limit of seven days has been proposed in two. One prohibits embryo research altogether.
For those who believe that the soul comes into existence at conception - or who reason that the benefit of the doubt concerning the presence of a human person should favor protection of the embryo - embryo research and creation for research have to seem wrong, even a great evil. For Christians, human beings are made in God's image. Anyone who believes or strives to believe that we are imperfect reflections of God will reel at the thought of disposable seed trays of human embryos. Contrarily, many Americans regard the embryo as little more than a conglomeration of insentient cells. They reel at the thought of depriving ourselves of knowledge which might lead to the cure of childhood cancers simply because we need to protect the rights of microscopic embryos, which we otherwise allow to be terminated in IVF clinics. One scientist who has done extensive research on mice and monkeys confided to us that after you have killed a few hundred lab animals, washing chemicals though a pinhead sized organism is not very disturbing. As the abortion debate attests - indeed, as the panel transcripts attest - we are a nation of pluralistic sensibilities.
We would like to register two concerns which ought to resonate with people of good will on both sides of the question As Neuhaus notes, the panel's recommendations are based upon a cost-benefit analysis which is, of course, an one inclined to accept the personhood of an embryo. However. even accepting the panel's utilitarian approach, it is our view that the costs of embryo research are a bit steeper than the panel has estimated.
Though some scientists are cavalier about the possibility, we believe that when combined with results from the human genome project, human embryo research could lead to a form of trait selection which most Americans find appalling today - though it is true, we might find it otherwise tomorrow, when sufficient benefits are promised. Almost weekly, researchers are claiming to find new markers for genetic defects ranging from cancer to depression, schizophrenia, alcoholism, and homosexuality. For a recent example, the New York Times (November 1) reported that defects in the same group of genes may be responsible for many different skeletal disorders. Though none of these disorders is life threatening, they are, to varying degrees, potentially disabling and/or deforming. Should or would parents who were told that their child might bear this handicap choose to have the child? If we remember that this egg may be fertilized in a petri dish, the choice not to have the child does not require an abortion, but "only" the destruction of a "pre-embryo" after a genetic examination. So the decision might be easier to make than you may imagine.
Moreover, in the near future, we will also have the technology to flush a naturally conceived embryo from the uterus in order to examine it for signs of potential genetic defects. Of course, what constitutes a genetic defect may very well vary with the social, political, and economic climate of the times. In the case of parents who carry a gene for a fatal disease, pre-implantation diagnosis can be seen as a therapeutic, and perhaps humane, procedure that will in all probability be covered by health insurance. But it doesn't take much imagination to foresee the abuse of this technology by those who can afford to pay for it. Indeed, we have spoken with a director of a urban fertility clinic who, while supporting embryo research, was candid enough to acknowledge that there are plenty of people out there looking for the perfect child.
Commendably, the NIH panel expressed deep moral concerns over the possible buying and selling of research gametes and embryos. Unlike procuring sperm, procuring eggs is both a parlous and painful procedure, and even if there is no payment for the egg, per se, it is certainly reasonable to reimburse the donor for all she must endure. As the panel recognizes, the gamete market is already highly commercialized, with a Ivy League woman being offered upwards of $2,000 for her participation in an egg-donor program. College-age woman are routinely solicited for such donations. Nevertheless, since the true market value of the egg may be much higher, $2,000 her time and trouble is well within the level of compensation. permitted by federal regulations governing human subjects research. But as professionals in this business have admitted to us, the distinction between paying for one's participation or for one's egg is merely linguistic. In either case, the woman is $2,000 richer than she was to start with, and for many that is hardly an insignificant sum.
It seems that we can not answer the question as to whether or not to publicly fund research on protohumans without deciding both for ourselves and future generations what it means to be a person. By leaving this question to a panel of experts, we as a people are saying something about ourselves that we may not want to hear.
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