The Politics of Women's Health
Emerging Biotechnologies: Cloning
Letters to the Editor, New York Times
"The Great Debate on Cloning" Opening Remarks
January 28, 2002
(A shortened version of this letter appeared in the 1/31/02 editon of the New York Times)
Despite my repeated efforts to make clear several crucial distinctions between the position on cloning of the Boston Women's Health Book Collective and that of the Catholic Church, these were omitted from Stolberg 's January 24th article, thus leaving serious misimpressions. First, our statement, now signed by over 100 individuals and groups, calls for a ban on human reproductive cloning and a 5-year moratorium on embryo cloning solely for research purposes (so-called "therapeutic" cloning). Unlike the Catholic Church, which is opposed to all embryonic stem cell research, we support almost all embryonic stem cell research because of its therapeutic potential. Our objections pertain only to stem cells derived from embryo cloning. This is a rather significant difference, even though we do share similar concerns with the Church about the development of germline genetic modifications and the potential resurgence of a eugenics movement.
We believe that a moratorium on embryo cloning for research purposes would represent the most prudent policy, although a bill calling for such a moratorium has not yet been introduced in the U.S. Congress. Such a bill would allow time for research on the many thorny problems surrounding embryonic stem cell behavior to see if they might be resolved (clonal embryos are not needed for this research). Moreover, alternative approaches to the problem of immune system rejection could be further studied to see if embryo cloning would even be necessary in this regard.
A moratorium would also offer the opportunity for public discussion about whether we want to allow such technologies to be used beyond the generally-accepted purposes of medical therapies to the more controversial arena of genetically modifying our children’s traits. We may choose, for example, to more tightly regulate technologies that have the potential to fuel a new eugenics movement, and the moratorium period would offer such a period of reflection.
There are scientists willing to acknowledge that what the public has been hearing over and over again represents more hype than a true assessment of the uniquely important features of embryo cloning. Those of us calling for greater caution do not believe that a moratorium will kill “thousands of people” because a cure for them will somehow be unconscionably delayed. There is simply no good evidence for such assertions.
We hope your readers will go directly to our website to read the long list of individuals and groups who also support a moratorium on embryo cloning. And contrary to the suggestion in the Stolberg article, the National Women’s Health Network is not at odds with our organization but in fact is one of the first endorsers of the position statement.
Although we can understand why Stolberg found the "strange bedfellows" phenomenon both interesting and humorous, it is also important to be honest about genuine differences. Our thirty-year track record working for reproductive rights should dispel any notions that we may be "leaning right." Embryo cloning involves the development of powerful new technologies with profound implications for the future of humanity. Both those "leaning left" and those "leaning right" can appreciate the pressing need for a fuller discussion that would draw upon the wisdom of many disciplines, including science.
Co-author, Our Bodies, Ourselves for the New Century
On April 2, 2002, OBOS Executive Director Judy Norsigian participated in a debate about whether human cloning should be banned at the Boston University School of Communication. Below are her opening remarks from the event.
Although the main focus of this evening’s debate is the matter of human reproductive cloning, I plan to address as well at least for a few minutes, the subject of research cloning, whereby clonal embryos are produced not for purposes of human reproduction but for purposes of harvesting stem cells to use in research to develop medical therapies.
Most of us are now well aware of how controversial the subject of human reproductive cloning has become. Even before Ian Wilmut and his colleagues produced Dolly the sheep, there had been quite a science fiction literature exploring the world of cloning, and there had been a number of commissions and committees that dealt with cloning, usually in the context of larger discussions about genetic and reproductive technologies. Dolly, of course, was the first successfully cloned sheep - the one in 277 clonal embryos that actually made it to birth and beyond, albeit in a relatively unhealthy state. As we know, she was recently put to death when her health problems became so burdensome.
So how do we decide whether or not society should sanction human reproductive cloning? Presumably, we would have to believe that the net benefits would outweigh the net risks in order to give our approval. I myself don’t think that they do and, moreover, I agree with Professor George Annas and others who argue that the precautionary principle of international law should be applied to human reproductive cloning, that governments should protect public health and the environment even in the absence of clear evidence of harm. This approach would require cloning proponents to first prove an important societal purpose for such cloning before the experiment is allowed to go forward, rather than placing the burden on government to prove that there is some compelling reason NOT to approve it. I would like to touch upon several specific considerations that lead me to the conclusion that human reproductive cloning not be allowed:
Even though I recognize the possibility that human reproductive cloning might be developed so that it could be someday done relatively safely, I also recognize that there is no ethical way to “get there” from here. That is, no matter how much we do studies with animal models, scientists note that there are likely to be bizarre and unpredictable outcomes from the first attempts at human reproductive cloning. We could certainly learn from these early experiments and improve upon the techniques that would be used in producing subsequent genetic duplicate humans, but the first bad outcomes simply could not be avoided. And some of the bad outcomes may not be known for a long time, for example, negative effects on the future fertility of cloned offspring. Also, we may at some point discover that we need to use younger DNA in order to avoid problems with premature cellular aging, but what about all the children who had been produced with older DNA? Can we so readily discount the potential negative effects on their lives? I believe that it is unethical to pursue reproductive cloning research, especially in the absence of some great and compelling need that would warrant such experimentation on humans.
I would also like to mention the substantial health risks that would be borne by women who would donate their eggs for somatic cell nuclear transfer -the technical term used for the cloning process. We already know something about these risks, because many women now donate eggs for use in infertility clinics. These women take powerful drugs that first suppress and then hyper-stimulate the ovaries, so that multiple follicles and eggs are produced rather than the single egg a woman typically releases in one menstrual cycle. Ironically, we have not yet done the necessary research that would adequately assess the risks of these drugs - and one of these drugs used to suppress the ovaries - Lupron - has never been approved by the FDA for this specific purpose (it is on the market for other approved uses and is thus available for what we call “off-label” uses, such as this use in infertility clinics). More can be said about this drug later, especially when we consider the case of cloning solely for research, rather than reproductive purposes. Suffice to say that the risks of this drug are still not well-enough studied, so that adequate informed consent would be possible. There are thousands of adverse drug reports that have been sent to the Food and Drug Administration (FDA), including reports of several hundred hospitalizations and 23 deaths among women, but due to shortages in FDA staff, these reports have not yet been reviewed carefully to determine if there might be any cause and effect relationships. Something worth mentioning is that Advanced Cell Technology, when it sought egg donors for its work on human embryo cloning - for research and not reproductive purposes - did include in its informed consent document the risk of death. Also, last month in the United Kingdom, a group of fertility experts publicly raised concerns about the ethics of asking young women to donate eggs given the long and short term negative health consequences that they may experience.
But assume society ignored pleas to halt such unethical research and did conduct experiments that ultimately resulted in safe human reproductive cloning techniques. What are other considerations that would warrant a halt to this practice?
Commodification and objectification:
Although aspects of commodification are already present among some of the assisted reproductive technologies now in use, cloning technology catapults us further in that direction. Right now, some people select the source of the sperm or eggs that they will use with assisted reproduction on the basis of certain characteristics of the egg or sperm donors. Some prospective parents have offered especially large sums of money to would-be co-ed egg donors from so-called Ivy League schools. Sometimes prospective parents want the gamete donor to be blond, or smart, or athletic.
Cloning, in contrast, is not just a simple extension of what is already going on, but a radical departure and even leap into the world of human genetic manipulation and babies made-to-order, the world of so-called “designer babies.” I will discuss this further in a moment.
Do we want to risk creating a world in which our children are vastly more likely to be seen as commodities, or objects made to manufactured specifications? Does the extent to which we can produce our children according to certain specifications increase the likelihood that we will treat them as manufactured products? As objects that may or may not meet our expectations? As commodities rather than human beings to which one ought not to assign monetary value? Will we be more likely to see our children with disabilities as inferior "products" and thus value them and other people with disabilities that much less?
Although no one could prove that human repro cloning would result in a vastly greater tendency to thus commodify our children, neither could anyone prove that this would not be the case. It is a very real risk that I believe greatly offsets what relatively few advantages one might gain from having reproductive cloning. Again, I would urge the precautionary principle approach.
We might also pause here and give consideration to the words of a noted health care economist from Princeton University, Professor Uwe Reinhardt: "Instead of necessity being the 'mother of invention,' we now have invention being the 'mother of necessity' in this market-driven world."
Individuality and personal identity:
Many would argue that the production of genetic duplicate humans challenges conventional notions of individuality and personal identity in ways that would be detrimental, especially in cases where a person would be cloned from an existing adult. Some argue that we rob an individual of his or her essential uniqueness by depriving them of certain unknowns, as would be the case when a child is cloned from a grown person with a known phenotype. Although one could make arguments for potential harm that would result from the many strange familial relationships that are possible with cloning, none of us can now know for sure what would actually happen. For example, the child cloned from a grandparent's genetic material would at the same time be the genetic parent as well as the offspring of its own gestational or rearing parent. That novel situation would certainly strike many of us as bizarre, but we cannot know now exactly how or whether it would be likely harmful to the child so produced. I will leave further discussion of this to others, but I do acknowledge that there is certainly SOME potential for harm, and thus I would want to be sure of compelling benefits on the other side in order to be willing to risk such harm.
For me, this is always a relevant concern when considering new technologies that are likely to be expensive and largely serve to widen the already growing gap between wealthier and poorer individuals. The development of such technologies often draws research dollars away from other technologies and solutions that would confer significant benefits to the wider public. I recognize that concerns about equity usually fall upon deaf ears in our increasingly market-driven lives, but I still hope that concerns about justice and equity might someday be given more weight in debates like this one.
Procreative liberty (reproductive rights):
The key question here is: Do we take an essentially no-holds barred approach to reproductive liberty? Do we allow parents to create cloned children if there is no way yet to prove harm to the offspring or gestating mothers as well as inadequate data on the harm to women who undergo egg retrieval? Should we view hrc as inevitably following from current understandings of procreative liberty? These are questions well worth exploring in some depth, with a full public discourse, before we might allow human reproductive cloning to go forward.
Admittedly, there are some potential benefits that some might cite:
- What about using cloning to avoid disease? (This is a topic for a longer discussion, but it should be noted that preimplantation genetic diagnosis, already in use, enables us to avoid a growing number of serious diseases and conditions. In other words, PGD would be a viable alternative to cloning in most of these cases.)
- What about using cloning to produce a replica of a dying child?
- What about cloning the sole surviving family member left after a genocide?
- What about a situation where both members of a couple are sterile and have no gametes, but wish nonetheless to have a genetic relationship to their child?
- What about the lesbian couple who wants to have a child who would have the genome of one woman in the couple and who would be gestated by the other, so as to gain a biological connection for both parents?
There are certainly other such situations in which reproductive cloning would provide the only way to achieve these goals, but must society say yes to these possibilities even in the face of the substantial harms that might result? Does our obligation to help individuals procreate and to become parents mean that we support new reproductive technologies at whatever price, in terms of financial costs, risks to physical health, and altered human relationships with potential harmful effects? I answer no to that question, as I view procreative liberty as integrally related to other social and ethical concerns.
For example, Professor George Annas and others have noted how we have yet to develop reasonable and enforceable policies regarding the rights, responsibilities, and conflicts that may emerge among the 5 potential parents of children currently born through the use of assisted reproductive technologies (ARTs) - even 25 years after the introduction of in vitro fertilization (IVF). When we add the option of having a nucleus donor as well, we introduce the possibility of 13 different parental configurations, as noted by the attorney Nanette Elster, with 4 to 10 competitors for the status of parent. This is yet another reason to tread carefully in this area.
THE MATTER OF RESEARCH CLONING
Finally, although not the primary focus this evening, embryo cloning solely for research purposes deserves some mention. Our organization and over 100 individuals and groups signed a statement in 2001 calling for a ban on HRC and a moratorium on research cloning that is available at our website: www.ourbodiesourselves.org. We also have our House and Senate testimony on cloning posted at our website for those of you interested. There, we explicitly indicate our support for embryo stem cell research using embryos that would otherwise be discarded from IVF clinics (and here we are in great disagreement with President Bush and the Catholic church). We also note several reasons why a moratorium on embryo cloning for research is prudent public policy, including the question of risks to women’s health, the need for further progress with conventional embryo stem cell research, and the need to first address the use of this technology in creating inheritable genetic modifications that go far beyond treating serious disease and disability.
The last concern is my most pressing one, as it is highly likely that experiments on human embryo cloning would inevitably lead to human germline genetic manipulation, whereby an embryo would be created according to certain specifications, even if the original purpose of these experiments for more narrow therapeutic purposes only. This path to designer babies is fraught with enormous problems, including the potential of stimulating a new and powerful eugenics movement. And unlike Professor Robertson, I see many signs of the eugenics mentality alive and well in our society today.
For example, consider the following quotes from influential individuals:
Gregory Pence, Professor of Philosophy at the University of Alabama:
|"Many people love their retrievers and their sunny dispositions around children and adults. Could people be chosen in the same way? Would it be so terrible to allow parents to at least aim for a certain type, in the same way that great breeders…try to match a breed of dog to the needs of a family?" |
James Watson, Nobel laureate:
|"And another thing, because no one has the guts to say it: If we could make better human beings by knowing now to add genes, why shouldn't we? What's wrong with it?....Evolution can be just damn cruel, and to say that we've got a perfect genome and there's some sanctity? I'd like to know where that idea comes from, because it's utter silliness." |
Arthur Caplan, noted bioethicist:
|"Many parents will leap at the chance to make their children smarter, fitter and prettier….In a competitive market society, people are going to want to give their kids an edge…" |
We must also remember that any germline genetic manipulations represent inheritable modifications that would be passed on to future generations in unpredictable and potentially deleterious ways. It would be near impossible to stop the continued transference of problematic consequences. A moratorium on research cloning allows for the possibility of developing an adequate regulatory framework that would seek to prevent such a scenario. Bills that now allow human embryo research cloning to go forward do not establish an adequate regulatory framework, as I hope we will discuss later.
IN CLOSING, I would urge us all to give serious consideration to the wide range of consequences posed by new genetic technologies. For the topic this evening, each of us must ask if, in the final analysis, we view HUMAN REPRODUCTIVE CLONING AS FUNDAMENTALLY OPPOSED TO OUR BASIC HUMAN VALUES OR NOT. BY ADDRESSING THE MANY ISSUES INVOLVED, WE CAN MORE CONSCIOUSLY MAKE DECISIONS ABOUT WHAT KIND OF A WORLD WE WANT TO CREATE FOR OURSELVES AND OUR CHILDREN.
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