Background

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

Introduction

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 months^vi. 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 definitions^vii: 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.

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