The Implications of Human Reproductive Cloning and Germ Line Alteration for Women and Women's Health: Ten Mis-Conceptions

TEN MIS-CONCEPTIONS:

My purpose in outlining these mis-conceptions is to debunk some existing myths surrounding human genetic manipulation in general and germ line alteration and human cloning in particular. In so doing, I focus only on potential technological harms within the broad context of U.S. culture.

1.WOMEN'S DISEASES, ABILITIES, AND PERSONALITIES ARE GENETICALLY DETERMINED AND THUS, SOLUTIONS TO PROBLEMS ARE GENETICALLY BASED. "Genomania", the term coined by Ruth Hubbard, a biologist and professor emeritus from Harvard University and board member of the Council for Responsible Genetics,^x refers to the way in which biological determinism has entered into the public's consciousness through the media.^xi  Our lives are increasingly pervaded by a flow of biomedical knowledge showing a connection between biology and identity and biology and disease. We are witnessing the over-geneticization of people and life. Genes alone do not determine a person's health, ability or personality. In fact, the majority of diseases, abilities, and personalities are influenced by multiple genetic and environmental factors. Ultimately, we are complex social and biological beings.

2.THE HUMAN GENOME PROJECT AND HUMAN GENOME SEQUENCE IS "NEUTRAL". Interestingly, the question of whose genome is being matched and whose sequences are we being compared to often gets overlooked. The human genome sequence, which women are being compared to, is referred to by scientists as "neutral" in that it is a generic composite, developed mainly from existing cell lines of healthy individuals of both sexes from different races and ethnic groups.^xii Based on past lessons, we know that research on male subjects cannot always be accurately applied to women. Thus, is there really such a thing as a "neutral" human genome sequence, which disregards sex and other factors? Additionally, women need to question the soundness of genetic research costing three billion dollars, given the limited funding for research and inadequate coverage of basic rights of women including food, clothing and shelter. For example, this year California received an F Report Card rating for its lack of access to health coverage and health care with a record 20% of women uninsured.^xiii

3. GERM LINE ALTERATION AND HUMAN REPRODUCTIVE CLONING IS RELATIVELY RISK FREE AND WHATEVER RISKS EXIST WILL BE WORKED OUT IN A SHORT TIME. The pro-human reproductive cloning "spin team" is up and running. In the media, pro-cloning scientists are emphasizing what they know and are planning that one success will erase all ethical and safety concerns. It is suggested, despite bans in most of Europe and in four U.S. states, that human cloning is inevitable and just a matter of time. Dr. Zavos, one of the team members who will attempt human reproductive cloning said, "We have a great deal of knowledge. We can grade embryos, we can do genetic screening, and we can do quality control". Seemingly, as an after thought he added, "it's not the easiest thing. The stability of the genetic information is what's important. We are cloning a human being now; we are not trying to create a Dolly. You don't want to create a monster." ^xiv In a recent television interview, he added, "we don't intend to step on dead bodies to get there." But cloning babies is only a matter of time.^xv

Women need to be greatly concerned when potential risks of human reproductive cloning are downplayed or ignored. To create animal clones, scientists frequently made hundreds of failed attempts to develop viable embryos. Many, including medical professionals and ethicists, have posed the possibility of cruel failures in human cloning, where genetic abnormalities result in grotesque fetuses unable to survive outside the womb and neonatal mortality.^xvi "All sorts of things can go wrong," said George Seidel, a cloning researcher at Colorado State University. Cloned cattle and sheep are often born dangerously large. A calf might normally weigh 100 pounds but a clone might weigh 160 pounds. This excessive size prevents the calf from having room to grow and wiggle resulting in all sorts of limb deformities. "Sometimes the kidneys aren't right -they're just plain put together wrong- or the heart is, or the lungs, or the immune system," he added. "It can be a unique abnormality in each case. They can die within a few days after birth, or sometimes they just can't make it after you cut the umbilical cord." Nobody really knows why.^xvii Even Dr. Harry Griffith, assistant director of the Roslin Institute, Scotland, which successfully cloned Dolly, the sheep, said on BBC News Online, "It would be wholly irresponsible to try to clone a human being, given the present state of technology. The success rate with animal cloning is about one to two percent in the published results, and I think lower than that on average. I don't know anyone working in this area that thinks the rates will easily be improved. There are many cases where the cloned animals die late in pregnancy or soon after birth".^xviii Others have cited risks to women in carrying clones. For example, several scientists said almost all of the first 100 clones will abort spontaneously because genetic or physical abnormalities, putting the health and lives of the surrogate mothers at risk.^xix

Scientists and doctors who support human genetic manipulation argue that any woman undergoing these new techniques will be told about all the risks in order to make an informed decision. Dr. Zavos said, "Cloning has already been developed in animals. The genie is out of the bottle. It's a matter of time when humans will apply it to themselves, and we think this is best initiated by us... with ethical guidelines and quality standards."^xx But can these same doctors, working at such high stakes for success and fame, and Institutional Review Boards (IRBs), within private hospitals and clinics motivated by profit, be entrusted to develop informed consent protocols that are in the best interests of women? This, I argue, is a serious conflict of interest. We have examples from the past illustrating abuses and the need for additional mechanisms to protect women and women's health. Women who underwent in-vitro fertilization (IVF) techniques, often to overcome male infertility problems, read and signed informed consent forms but some women later learned that information about possible risks was withheld; specifically, some women were not informed about a Stanford University study with results linking multiple failed attempts at IVF to an increased risk of ovarian cancer.^xxi When I asked several doctors why this information was not reported to infertile couples, they said the results were not statistically significant. I wondered out loud why women should not be allowed to read the study to determine that themselves. Last year I, along with a woman who donated her eggs on three separate occasions, was interviewed on KPFA Radio about the social and ethical issues of egg donation. Her doctors, whom she trusted, repeatedly told this woman that the hormones she was given to stimulate egg production had no known health risks. Since there is evidence about potential risks, this is irresponsible information. Women are rarely provided with, what the National Women's Health Network (The Network) refers to as, evidence-based, independent information to empower women to make fully informed decisions. For example, how many organizations do you know, such as The Network, that act as an independent voice for women's health by accepting no money from companies that sell pharmaceuticals, medical devices, dietary supplements, alcohol, tobacco, or health insurance? We need to ensure that women will not only have informed consent forms but will have access to evidence-based, independent information.

In addition to physical risks, women face serious social, psychological, moral, and legal risks. They will be burdened with the moral status of their embryos and responsibilities for future generations. If human reproductive cloning is allowed, social relationships between people will become very complex and we will need additional guidelines about how to act towards one another. A cloned child will ask, "What is my relationship to you?" and will want to know, "Are you my mother, sister, or twin?"^xxii What will happen if a woman refuses to use these new genetic tests and her baby is not considered "normal" by some external standard or committee? Furthermore, who sets the standards and decides what is "normal"? Many in the disability community are rightfully concerned about these issues and others including, how embryo decision-making occurs at the pre-implantation stage.^xxiii What will happen if and when a woman makes a different decision than her doctor wants? What will happen if a woman and her partner (male or female) cannot agree on similar qualities for their baby? Will these women face criminal charges or wrongful birth suits? In a societal context where women have been criminally charged for failing to agree to a caesarian or charged with ingesting drugs that endanger their newborn, these women might well face criminal charges or wrongful birth suits. Such a scenario is not paranoia but rather, raises some serious concerns about both the short and long term consequences of new human genetic manipulations including human reproductive cloning. Overall, we are in danger of losing our humanity.

4. THE COMMERIALIZATION OF REPRODUCTION IS NOT A PROBLEM AND WILL NOT ADVERSELY IMPACT WOMEN

According to a recent newspaper report, Mark Eibert, a cloning advocate and attorney, said he received requests daily from people asking whether or not they can participate in clinical trials of reproductive cloning. Of those, he estimates that 90 percent are infertile, 1 percent are gay or lesbian, and the rest are worried about genetic diseases.^xxiv What isn't revealed is just as important as what is. Who will be the first subjects of these new experiments? What selection criteria will doctors use to decide? Will it be wealthy women, mainly Caucasian, who can afford to pay the estimated $50,000 fee? Or poor women, especially women of color, who are too often subjects of human experimentation trials? Within the United States and abroad, I could imagine a scenario in which both would be possible. Within the United States, despite recent evidence that black women suffer 1.5 times more from infertility problems than white women, white women disproportionately use expensive technologies to bear children, while black women disproportionately undergo surgical procedures that prevent them from being able to bear children.^xxv What will this mean for all women as we face new human genetic manipulation techniques on the horizon?

5. GERM LINE ALTERATIONS AND HUMAN REPRODUCTIVE CLONING WILL SAVE A DYING CHILD, REPLACE A DEAD CHILD AND REDUCE HUMAN SUFFERING. I do not think there is any disagreement that we would all want to save a dying child or reduce human suffering. The question is, can germ line alteration really save a dying child and cure diseases? In U.S. mainstream society where most people are terrified of death and dying, we strive for quick fixes. Unfortunately, there are no quick fixes to many diseases and to death. Scientists and doctors held out the same hopes for somatic therapy, which has been largely unsuccessful, and sometimes quite dangerous. Last year's untimely death of a young man undergoing somatic therapy raised many concerns about the process and forced a critical re-examination of the health risks of somatic therapy. We know even less about germ line alteration.

The first time I heard Marcy Darnovsky^xxvi speak at sociologist Diane Beeson's home^xxvii she told the story of how a female bioethicist, testifying as an expert witness at a California Advisory Committee on Human Cloning, argued that one reason reproductive cloning should be allowed is to replace the loss of a child. What an insult to human dignity -as though a child who dies can so easily be replaced! Among some grieving parents there is a misperception that a cloned child will be the exact replica of a child that died.^xxviii Since each child is unique and can never be replaced, this sets up a dangerous precedent. George Annas, a biomedical ethicist and lawyer, has said, "perhaps [the] most compelling [reason to clone a human] is cloning a dying child if this is what grieving parents want. But this should not be permitted. Not only does this encourage the parents to produce a child in the image of another, it also encourages us all to view children as interchangeable commodities. The death of a child thus need no longer be a singular human tragedy, but rather an opportunity to try to duplicate the no longer priceless deceased child." ^xxix And yet as I write this, the scientific director for the Raelian religion based in Canada, which believes that humans are clones of extraterrestrial scientists and that human cloning is the key to eternal life, said the group has begin to work on the clone of a 10 month old baby girl who died earlier this year.^xxx

Additionally, in a transglobal world, we also need to be extremely cautious about eliminating specific genes or diseases when we do not know the full implications of what this means. As a medical anthropologist, I have learned there are many complex relationships between disease and health; for example, in Africa, sickle cell anemia offers protection against malaria. Sometimes we may believe we are doing good but may actually be doing harm.

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