The Implications of Human Reproductive Cloning and Germ Line Alteration for Women and Women's Health: Ten Mis-Conceptions i
Lisa Handwerker, Ph.D., M.P.H.
First presented 2/3/01 at a San Francisco, California meeting on human genetic manipulation and its implications for women and women’s organizations co-sponsored by The Exploratory Initiative on the New Human Genetic Technologies and the Boston Women’s Health Book Collective. Revised March 2001
My interest in the subject of human genetic manipulation is three-fold. 1) From a personal perspective --as a Jewish woman who is named after a great uncle who died fighting the Nazis and who lost other family members in the Holocaust and as an Ashkenazi Jewish woman who, while exposed to two cancer hot "spots" (I grew up on Long Island and currently, live in the East Bay.), has been incorrectly informed that my genes alone determine that I am at higher risk for developing breast cancer and that there are genetic tests which can predict my risk for developing breast cancer in the future--, I am concerned about the ways in which some medical beliefs and practices, professing to do good, can actually do harm. 2) From an activist perspective-- as a researcher, professor, writer, policy maker, consultant, labor coach and translator, health educator, and community organizer, my life work has been devoted to improving women’s health. As one of the earliest interns (1979) and a current board member of the National Women's Health Networkii in D.C., an advocacy group for women's health, for the past three years I have argued for the need to develop a position paper on new genetic technologies which anticipates the ways in which women's health will be impacted. Treatment decisions for women currently made by the FDA will soon be in the hands of individual scientists and clinics. 3) From a research perspective: my current research on human genetic technologies is an extension of my earlier doctoral research on the social and ethical issues of reproductive technologies, including test-tube babies and sperm banks, for infertile women in China. iii
My paper is based on research that I conducted both as a consultant for the Exploratory Initiative on the New Human Genetic Technologies (Exploratory Initiative) iv this summer and my own ongoing research. This summer, based on my interest in women's health, I compiled: 1) an annotated bibliography of relevant sources 2) a list of key arguments for and against germ line alteration and human reproductive cloning 3) a list of women's organizations and identify those that have a position on genetic manipulation [I learned that few women's organizations have a formal position paper on these topics with the exception of The Council on Responsible Genetics, Boston Women's Health Collective, Resolve, American College of Obstetrics and Gynecologists, American Society for Reproductive Medicine, and Breast Cancer Action which have related paper topics.] and 4) a list of next steps which brings us to this meeting today organized by the Exploratory Initiative and the Boston Women's Health Book Collective.v
In late January 2001, a breaking news story announced that a well-known Italian infertility specialist (who had helped a 62 year-old woman become pregnant in 1994), Dr. Severino Antinori, and his colleague, Panayiotis M. Zavos, Professor of Reproductive Physiology at the University of Kentucky, had plans to clone human beings within the next 12 to 24 monthsvi. Despite recommendations by President Clinton's National Bioethics Advisory Committee to ban human cloning as unsafe resulting in a five-year moratorium (June 1997- June 2002) on federally funds for human cloning, this announcement is a culmination of efforts by medical professionals who favor human genetic manipulation to overcome public repulsion and resistance. These scientists, researchers, and bioethicists who favor human genetic manipulation insist that these techniques are low risk, helpful to women and children by reducing disease and producing a physically and mentally "superior" baby by design, and inevitable. This paper is a critique of germ line alteration and human reproductive cloning from the perspective of women and women's health.
Before I describe ten mis-conceptions, I want to provide some key definitionsvii: Somatic genetic engineering is a gene alteration process occurring in specific organs and tissues of an individual's body without impacting genes in future generations. Germ line genetic engineering is a gene alteration process occurring in germinal cells such as eggs, sperm or very early embryos which impact every cell in the individual's body and are passed on to future generations. Human reproductive cloning is asexual reproduction. An egg is removed from a woman's body. The nucleus is removed from that egg which, after it has been stripped of its genetic materials is, called an ovacyte. The regular body cells (skin, hair etc) or undifferentiated stem cells of another individual (man or woman) are inserted into the ovacyte. A clone doesn't have a genetic mother or father as in sexual reproduction when an embryo gets half its genes from the woman's egg and half from the man's sperm. It has a "nuclear donor" and also gains some genetic material from the original egg.viii Stem Cells are undifferentiated cells that can later develop into other body parts. Stem cell research is at its earliest stages and stem cells of different origins, including embryos and fetuses, are being explored for research purposes. Pre-implantation diagnosis or genetic testing is an experimental method designed to identify genetic defects or chromosome abnormalities at two different stages: either in an ovum (unfertilized egg) before fertilization or in an embryo before fertilization. ix
I also want to acknowledge that very important differences are bound to exist among and between women and women's groups about the human genome project and new human genetic manipulations. Where women draw the lines between acceptable and unacceptable practices will be influenced, in part, by our multiple identities including whether or not we are: rich, poor, rural, urban, lesbian, transgender, heterosexual, disabled, Caucasian, Jewish, women of color, multi-ethnic, religious or non-religious, pre or post-menopausal, young, mid-life, old, fertile and/or infertile. And finally, women's decisions will be influenced by our political predilections, including our feminist leanings. For example, are we members of the Feminist International Network of Resistance to Reproductive and Genetic Engineering (FINRRAGE)? (Women opposed to all new reproductive technologies on the grounds that they are ultimately oppressive and dangerous for women); Are we post-modern feminists? (Women who reject grand theory to explain inequalities but as a result, may also shy away from a political position.); Are we cyborg feminists? (Women interested in the ways we can produce forms of resistance as part-machine/ part-human.); Are we libertarian feminists? (Women committed to individual reproductive liberty and procreative freedom.); or Are we egalitarian feminists? (Women dedicated to social justice and to understanding the ways in which social position influences the ways in which technologies are used and inform us.).
Having said that, I now want to argue, while respecting these differences, that we need to consider a united position, which opposes human reproductive cloning and germ line alteration. These new genetic techniques are not in the best interest of all women. Women, more than men, will bear the burdens --physical, psychological, social, moral, economic, political, and legal-- of these technologies and any negative consequences.
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 Darnovskyxxvi speak at sociologist Diane Beeson's homexxvii 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.
6. HUMAN GENETIC MANIPULATION WILL NOT LEAD TO THE COMMODIFICATION OF AND GENETICIZATION OF CHILDREN
We have already witnessed ways in which children have become commodities in the 21st century; for example, this past week twin babies were sold on the Internet to the infertile couple who bid the highest. Genetic manipulation is likely to result in the further commodification of children because people will begin having, what Marcy Darnovskyxxxi and others refer to as, "designer babies". The distinction between germ line therapy and germ line enhancement is a very slippery slope. Advocates of germ line alteration tell us that women will be able to design a "superior"child through the selection of personality traits, physical attributes, sex, and intellectual and moral qualities. The consequences of selecting specific characteristics in a child may lead to a devastating consequences including psychological backlash of anger, stigma, and discrimination against any child, and especially one who cannot or does not live up to expectations. Women making the decisions will also face incredible pressures, moral decisions, and potential backlash if babies do not work out as planned. Additionally, some in the disability community argue against any form of pre-implantation diagnosis and worry about what that means for the further stigmatization of disabled people in our society.xxxii The movie, Gattaca, vividly illustrates societal impacts when one attempts to control a baby's destiny from birth. There is an erroneous assumption that diseases, personalities, and characteristics are all genetically pre-disposed. Last year, A New York Times magazine article predicted a future scenario called "The Genetic Report Card" in which a baby's first official check-up would be in the petri dish while s/he is an eight-cell embryo.xxxiii
7. GERMLINE ALTERATION AND HUMAN REPRODUCTIVE CLONING CURES THE 'INCURABLY' INFERTILE AND OFFERS A LAST CHANCE FOR A GENETIC CONNECTION.
Professionals, such as lawyers and IVF doctors, professing to speak on behalf of infertile couples make this argument. Ironically, one of the rationalizations for human reproductive cloning is the low success rate of IVF. While testifying at the California Advisory Committee on Human Cloning, one well-known IVF doctor relied on the same statistics used to convince infertile couples of IVF's success, to make his argument that IVF's low success rates justified the need for human reproductive cloning.
This week the media reported that of the couples who have volunteered to be the first to try human reproductive cloning 90 percent are infertile couples and 1 percent are gay or lesbians. xxxiv Among some women, especially infertile women and lesbians, human reproductive cloning may be a potentially divisive issue. In the case of infertile couples, even within RESOLVE, a national organization for infertile couples, women are divided about whether or not to support human reproductive cloning. In the rare case of an infertile couple in which neither person produces gametes, human reproductive cloning would allow for a genetic connection that no other reproductive technology could offer. Nevertheless, many feel this is dangerous threshold to cross to help a few. xxxv Generally speaking, lesbians have relied on alternative technologies and embraced many new reproductive technologies as a form of resistance to heterosexual nuclear families and as an opportunity for motherhood. Human reproductive cloning offers lesbian couples, in a society that is obsessed with biological connections and often uses this as a marker in legal custody battles, the rare opportunity to be genetically linked to both women -something even egg donation cannot accomplish (With egg donation, a lesbian couple may choose one woman to supply the egg and the other woman to carry the pregnancy to term and/or breast feed). To date, sperm banks, especially those serving mainly lesbians, have not taken a formal position for or against these newest technologies.
Professionals who support reproductive cloning would like people to believe that if anyone is against human reproductive cloning then we are against infertile couples. An anti-reproductive cloning position is not unsympathetic to the pain of infertility or to women and men experiencing infertility in their lives. Infertility is a painful life experience and even within the infertility community, members are divided about their support or lack of support of human reproductive cloning. In considering infertility, there are several important points to be made. First, new reproductive technologies never "cure" infertility but rather, they only offer temporary solutions to infertility or treatment, which may or may not result in a live birth. Anyone who has faced infertility problems and later had a child, through birth or adoption, will tell you that the infertility experience is still a part of her/his identity. Second, there is no indication to believe that new technologies such as human reproductive cloning will have any better "success" rates ("success" being measured by the live birth of a healthy child) than IVF, GIFT or ZIFT. Third, while I whole-heartedly support low risk research efforts to help infertile women, men and couples, I endorse preventive efforts. The majority of causes of infertility are preventable including occupational health hazards, environmental toxins, drug-induced infertility like DES, sexually transmitted diseases, accidents, and complications following childbirth or abortion.
8. HUMAN GENETIC MANIPULATION INCLUDING REPRODUCTIVE CLONING WILL RID SOCIETY OF ALL UNWANTED PREGNANCIES
Martine Rothblatt has written a book proposing "inocuseed", a technique for banking all men's semen as a way to end teenage pregnancies.xxxvi Each male will undergo a vasectomy at puberty and their sperm will be stored in a bank and reproduction will be controlled with no unwanted pregnancies. Certainly, this suggestion is an extreme measure to prevent unwanted pregnancies. What has happened to the promotion of condoms or other contraceptive methods to prevent unwanted pregnancies?
9. WOMEN WHO ARE ANTI-HUMAN REPRODUCTIVE CLONING ARE ANTI-PROCREATIVE LIBERTY AND ANTI-SCIENCE AND IN A DEMOCRATIC SOCIETY THAT IS UNACCEPTABLE.
In her new book, Genes, Women and Equality, Mary Briody Mahowald, a philosopher, has outlined two feminist positions.xxxvii 1) The feminist libertarian position states that is women's right to pursue individual liberty and procreative freedom. A majority of feminist libertarians would argue that if such genetic technologies become available, women should have access, and be free to choose among them. xxxviii The problem with this approach is that it fails to consider social inequalities among and between women based on racism, classism, ableism, ethnocentrism, and sexual orientation. Not every woman will have equal access to these technologies or will there always be the autonomy to make a decision. For example, a libertarian feminist fails to consider what happens if a heterosexual couple disagree on these technologies, who makes final decision or has the power in the relationship? 2) The feminist egalitarian position operates from a social justice framework. It considers the fact that a woman's autonomy is contextually located and ones social location - class, disability, race, ethnicity, gender influences our ability to make decisions and have access to technologies. Thus, feminist egalitarians are not only interested in women's access to a new technology but also how women's social location impacts the use or misuse of that technology. If a new technology increases inequities, women need to pay attention to those inequalities. We, as a society, need to equalize benefits and burdens associated with genetics for both men and women. Genetics is neither gender neutral nor color-blind. Even if all women had access to these technologies, we still might not want them. A feminist egalitarian might support some gene technologies, and still reject others, if and only if they were both equally available and women had equality within the broader social context.
10. WOMEN WHO ARE ANTI-CLONING ARE ALSO ANTI-ABORTION.
This mis-conception has far-reaching implications for women and women's groups. The human genome project potentially makes for interesting political alliances or rather strange bedfellows. For example, both the religious right led by the Vatican and the democratic progressive movement are anti-germ line alteration and anti-human reproductive cloning. But the Vatican does not distinguish between reproductive cloning and non-reproductive cloning or stem cell research. They are opposed to stem cell research on the grounds that such research, although not necessarily, may involve embryos or aborted fetuses. Many women and women's organizations support stem cell research even while they are opposed to human reproductive cloning. Furthermore, they do not want to be aligned with the Vatican's anti-abortion position. Rather, we prefer to collaborate with like-minded people who support a women's right, whenever necessary, to have a safe and legal abortion. The challenge for women and women's groups is how to work with other groups, on a policy that is both anti-germ line alteration and anti-human reproductive cloning but which is clearly not anti-abortion rights. (I am deliberately refraining from using the word "choice" since pro-reproductive cloning professionals use this word to mean procreative liberty.)
There is another interesting twist. Scientists and doctors in support of human reproductive cloning, I believe, inadvertently feed into anti-abortion politics by further delineating the separation of a fetus from the woman. This is ironic because human reproductive cloning may actually further the need for safe and legal abortions at a historical juncture when this legal right is being threatened. If human reproductive cloning occurs, we may be performing more late term abortions, also inflammatorily referred to as "partial birth abortions", than we have had to do in the past. Brigitte Boisselier, a French chemist who is the "scientific director" of Clonaid, the Raelians cloning venture, has said, "We want a healthy baby." All of the 50 young females eagerly volunteering to serve as egg donors and surrogate mothers, were prepared to undergo abortions if defects were revealed by ultrasound or amniocentesis. If one pregnancy failed, another surrogate would automatically step into line; there would be no need to wait another month, as you would if you were dependent on the cycles of one woman.xxxix While scientists claim that pre-implantation diagnosis can detect poor quality embryos and grade embryos while still in petri dishes, we know this is not always possible. Furthermore, not all "mutations/defects" are genetic and thus, identifiable at an early stage. In fact, evidence from sheep research suggests that high rates of fetal anomalies were discovered in late term pregnancy or soon after birth. Potentially, if human reproductive cloning is allowed this could have devastating consequences for women.
In conclusion, I ask you to seriously consider both the short and long-term consequences of these new human genetic manipulations, especially germ line alteration and human reproductive cloning, for diverse women. Some have argued that these new technologies offer potential for resistance and building new family forms. Others have argued these technologies can help infertile couples with no gametes. While this may be the case for a few, I am concerned that many more women will be harmed than helped. Overall, women --not men-- will bear the major physical, psychological, social, moral, legal, political, and economic burdens of these genetic manipulations. Finally and most importantly, human reproductive cloning and germ line alteration, whatever their risks, are unprecedented and irreversible.
Lisa Handwerker, a medical anthropologist, has a Masters in
Public Health from UC Berkeley and a Ph.D. in Medical Anthropology
from UC San Francisco and Berkeley. Her doctoral research, based
on one year of ethnographic fieldwork, examined female infertility
and new reproductive technologies in China. Since 1979, when Lisa
interned for the National Women's Health Network, she has worked
on women's health issues as a community health worker, labor coach
and translator, writer, researcher, professor, activist, policy maker,
and consultant within the United States and abroad. Lisa was the
chair of the Council on Anthropology and Reproduction for six years
and chair of the Berkeley Community Health Commission for two years.
Currently, as a health activist, Lisa serves on the board of the
National Women's Health Network.
i This paper was first presented on February 3, 2001 at the meeting in San Francisco, California on human genetic manipulation and its implications for women and women's organizations co-sponsored by The Exploratory Initiative on the New Human Genetic Technologies and the Boston Women's Health Book Collective.
ii Founded in 1975, The National Women's Health Network's mission is to advocate for national policies that protect and promote all women's health and to provide evidence-based, independent information to empower women to make fully informed decisions. To accomplish this mission, we: A) 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; B) Represent and are supported by our individual and organizational members; C) Research and analyze women's health issues from a feminist, critical perspective free from the influence of corporate interests; D) Create and disseminate evidence-based information on women's health issues to consumers, advocates, health care professionals, media and policy makers; E) Monitor and educate Congress and federal agencies to ensure that laws and policies as well as, research and regulatory decision-making reflect the interests of all women; F) Monitor information provided by companies that sell or promote pharmaceuticals, medical devices, and dietary supplements; link activists and community groups nationwide; and, G) Address the interconnections of health and social, racial, economic, and gender equity. The Black Women's Health Project, founded in 1981 by Byllye Avery, is another very important health resource serving the health needs of black women in the United States.
iii I have published various papers and chapters on this subject. For examples, see "Social and Ethical Implications of In Vitro Fertilization in Contemporary China" in Cambridge Quarterly of Healthcare Ethics, 1995, Vol 4, pages 355-363; "The Consequences of Modernity for Childless Women in Contemporary China" in Pragmatic Women and Body Politics; Margaret Lock and Patricia A. Kaufert, eds., U.K.: Cambridge University Press, February 1998; and "The Politics of Baby-Making in Modern China: Reproductive Technologies and the New Eugenics" in Infertility Around the Globe: New Thinking on Childlessness, Gender, and New Reproductive Technologies, Marcia C. Inhorn and Frank van Balen, eds.. Berkeley: UC Press, Forthcoming 2001.
iv The Exploratory Initiative on the New Human Genetic Technologies, a fiscally sponsored organization, was founded in 2000 by Rich Hayes, coordinator, along with Marcy Darnovsky. I want to thank Rich Hayes and Marcy Darnovsky for the opportunity to explore my interest in the relationship between women's health and human genetic manipulation as a consultant during the summer of 2000. To contact the Exploratory Initiative email firstname.lastname@example.org. Rich Hayes has written numerous publications on this subject including "Notes On the New Initiative for Human Germline Genetic Engineering", December 1998. To receive the Genetic Crossroads Newsletter contact Marcy Darnovsky by email: email@example.com.
v The Boston Women's Health Book Collective (BWHBC), with the first group of women convening in 1969, is a nonprofit organization devoted to education about women and health. It supports women questioning their medical care and demanding women-specific health information. One of their first publications, Our Bodies, Our Selves, is still one of the best books on women's health available today. BWHBC web site is http://www.ourbodiesourselves.org/.
vi Article in Los Angeles Times by Aaron Zitner, Jan 28, 2001
vii Special thanks to Rich Hayes, of the Exploratory Initiative on the New Human Genetic Technologies, who first presented these definitions to me in a clear and understandable manner in 1999. See numerous papers by Rich Hayes, some of which have been compiled in "The Threshold Challenge of the New Human Genetic Technologies", January 5, 2001. Also, see definitions and diagrams in "Women and the New Genetic and Reproductive Technologies" presented by Marcy Darnovsky on Feb 3, 2001 at the same meeting in which I originally presented this paper.
viii See definitions and diagrams by Rich Hayes in publications available from the Exploratory Initiative.
ix "Preimplantation Genetic Testing" by Christina Shasserre, M.S. on the INCIID web page at www.inciid.org/preimplantation-gentics.html.
x Council for Responsible Genetics (CRG), located in Cambridge, Massachusetts has been a forerunner of important policy statements on genetics and social responsibility. CRG publishes a newsletter called Genewatch. For additional information call (617) 868-0870.
xi Exploding the Gene Myth by Ruth Hubbard and ElijahWald. Boston: Beacon Press, 1997.
xii Genes, Women and Equality by Mary Briody. New York: Oxford University Press., 2000, p. 32).
xiii Nearly A Failing Grade: A Report Card on the Health Status of Women and Girls in California. CA: The Women's Foundation, January 2001.
xiv "Italian, US Scientists Unveil Human Cloning Effort" by Andrew Stern, January 26, 2001; See www.Daily News.yahoo.com/h/n/m/20010126/cloning_dc_1.html.."
xv Interview conducted on "Cloning Babies: It is Only a Matter of Time." Peter Jennings, World News, ABC, Channel 7, February 13, 2001.
xvi "Italian, U.S. Scientists Unveil Human Cloning Effort" by Andrew Stern, Daily News, Jan 26, 2001.
xvii Quote in "A Desire to Duplicate" by Margaret Talbot. In The New York Times Magazine Section 6, February 4, 2001, p.45.
xviii BBC: http://news/bbc.co.uk/hi/English/sci/tech/newsid_11440001/114694.stm."
xix "Human Cloning Bid Stirs Experts' Anger" in the Washington Post, March 7, 2001. See http://washingtonpost.com/wp.-dyn/articles/A31014-2001March6.html.
xx "Fertility Docs Plans to Clone Humans" by Aaraon Zitner. In the Nation, Jan 2, 2001."
xxi See Beyond Second Opinions: Making Choices about Fertility Treatment. By Judith Turiel. Berkeley: UC Press, 1998. In her book Judith Turkiel, a health activist and a veteran of fertility treatments, sheds light on many fertility treatments and studies.
xxii Rich Hayes first brought these concerns to my attention at a groundbreaking meeting on human cloning in early 2000.
xxiii Marsha Saxton, a researcher at the World Institute on Disability (WID) and Debra Kaplan have written and spoken extensively on this subject. Also, see publications by Gregor Wolbring including Science and the Disadvantaged published by the Edmonds Institute in Canada, 2000.
xxiv UPI Science News Jan 28, 2001
xxv "Race and the New Reproduction" by Dorothy E. Roberts in GeneWatch, Vol. 14, No. 1, January 2001.
xxvi Marcy Darnovsky, a staff member of The Exploratory Initiative on New Human Genetic Technologies, is interested in and written about the impact on these technologies on children including issues about "designer babies". She can be contacted at firstname.lastname@example.org.
xxvii Diane Beeson organized a meeting at her home in 1999 to discuss these issues. It was attended mainly by health professionals and educators including sociologists, anthropologists, a medical pediatrician, geneticists, psychologists and researchers.
xxviii Diane Beeson made an interesting point at the meeting in her home. She said an irony of human cloning, if it happens, is that it may finally disprove biological determinist theories. It will become clear that a clone, while s/he may look alike, will never be the exact same person because of environmental influences and cultural experiences.
xxix Some Choice: Law, Medicine and the Market by George Annas. New York: Oxford University Press, 1998, pages 12-13.
xxx "A Desire to Duplicate" by Margaret Talbot. In The New York Times Magazine section, Feb 4, 2001, Section 6, p. 40-45, continued on p 67. This article is based on Margaret Talbot's research project on the Raelians, science loving alien-fixated sect, for whom cloning is a central tenet and are eager to put its faith into action.
xxxi Contact Marcy Darnovsky at email@example.com for additional information.
xxxi Again, see publications by Marsha Saxton, a researcher at the World Institute on Disability (WID) and Debra Kaplan. Also, see publications by Gregor Wolbring including Science and the Disadvantaged published by the Edmonds Institute in Canada, 2000.
xxxiii "The Genetic Report Card" in The New York Times Magazine Section, 1999
xxxiv UPI Science News January 28, 2001.
xxxv See Rich Hayes, "Appendix D. "Reproductive Human Cloning: Key Arguments". For publications contact him at firstname.lastname@example.org.
xxxvi Unzipped Genes: Taking Charge of Baby-making in the New Millennium. Philadelphia: Temple University Press, 1997. By Martine Rothblatt.
xxxvii Genes, Women and Equality by Mary Briody Mahowald. New York: Oxford University Press, 2000.
xxxviii Interestingly, during the Miss USA Pageant 2001 broadcast on CBS television on March 2 the top three contestants, Miss Texas, Miss District of Columbia, and Miss Georgia, were asked their final question on human reproductive cloning. The final celebrity judges, including Martha Stewart, listened intently as the three finalists were asked, 'many things which were once science fiction have now become science fact. What do you think of human reproductive cloning and should it be permitted?' During the Miss USA contest where female contestants represent, according to some, the ultimate symbol of liberty and democracy, the three finalists expressed opposition to human reproductive cloning. Feminist libertarians would argue that the finalists beliefs are paradoxical as they are in opposition to democratic principles. One contestant stated that while she opposed the cloning of human beings, she would support organ cloning. Another contestant argued against human reproductive cloning on moral grounds. And the third contestant, Miss Texas, who won the Miss USA 2001 title, said that she had read a lot about the subject since it had been in the news lately and she was strongly opposed to human reproductive cloning. She felt this procedure was against human nature. Another interesting note is that Miss Texas will devote her reign to campaigning for early detection and treatment of breast and ovarian cancer. I wonder what she thinks about genetic screening for these diseases.
xxxix Quote in "A Desire to Duplicate" by Margaret Talbot. In The New York Times Magazine Section 6, February 4, 2001, p.42.
@2001 by Lisa Handwerker
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