Emily Galpern: Center for Genetics and Society

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Before coming to the Center for Genetics and Society, Emily Galpern worked for 10 years promoting community health and well-being through coalition-building, advocacy, and health education. She holds a BA in women’s studies from the University of California at Santa Cruz and obtained her Master’s in public health in community health education from San Francisco State University in 2004. She completed a graduate research project on women’s sexual and reproductive health in southern Ecuador using a human rights framework, and conducted other research on health disparities and inequities and the impact of racial discrimination on health.
Here’s Emily…


What are some examples of the work the Center for Genetics and Society (CGS) do that affect many Americans’ daily lives? On a practical level, how does the Center’s mission statement of “The Center supports benign and beneficent medical applications of the new human genetic and reproductive technologies, and opposes those applications that objectify and commodify human life and threaten to divide human society,” play out in everyday life?
People are using new reproductive and genetic technologies every day to have children. One percent of children in the U.S. are now born through in vitro fertilization (IVF), and that number doesn’t even include alternative insemination. I work in the Gender, Justice, and Human Genetics Program at CGS. Our long-term goal is to work with advocates in a variety of social justice movements to develop and pass policies that will safeguard the health and human rights of all those using these technologies. Right now, there is hardly any regulation of the assisted reproductive technologies industry in the U.S. This means there is no public oversight to ensure the health and well-being of women who use the technologies and children born through their use. We also want to make sure that technologies developed don’t reinforce inequities, that they don’t foster “better breeding,” in which certain babies are valued over others.
At this point, we’re still at the stage of raising awareness and bringing people together for discussions within movements (for example, a statewide retreat in California for reproductive rights and justice advocates) and for dialogues across movements (we’ve been having quarterly round table discussions with disability rights and reproductive rights advocates). We’re working to build a national coalition representative of multiple social justice movements to craft policy that balances individual decisions with collective responsibility.
What are new genetic and reproductive technologies that many of us may not be aware of?
Pre-implantation genetic diagnosis (PGD) screens IVF embryos for the presence or absence of certain genetic characteristics. It was originally developed to screen out embryos with serious genetic diseases, like cystic fibrosis or Tay-Sachs, and is now also used to select for a boy or girl, or to see if an embryo carries a gene that might lead to adult-onset diseases, like breast cancer or Alzheimer’s. A concern we have at CGS is how technologies such as this, used to “select out” certain embryos, can devalue the lives of people with disabilities and reinforce stereotypes around sex and gender.
Another technology people are probably aware of but don’t know much about is egg donation. Young women are recruited by high-priced ads (and I’ve seen ones as high as 80K and 100K) to provide their eggs for another woman to get pregnant. The process involves hormonal stimulation over several weeks to produce multiple eggs in one cycle (rather than the usual one egg), and surgery to suction the eggs out of their follicles. The thing is, many clinics don’t fully inform women about the risks, particularly the fact that we don’t actually know the long term risks of hormonal stimulation. Clinics and egg brokers need to give young women full information so they can make fully informed decisions about whether they want to go through the process or not.
A third example is research cloning, a type of embryonic stem cell research that hasn’t been successful yet. This process uses fresh eggs from women, like egg donation for fertility, rather than leftover IVF embryos, which is what most stem cell research has used so far. A big question has been whether or not to pay women for eggs for research, but I think a more important question is whether scientists should be asking women to undergo egg retrieval when the research is in such early stages and when we don’t know the long-term health implications of hormonal stimulation.
As the project director on Reproductive Health and Human Rights at CGS, how do you promote a policy that reflects a commitment to all women’s health, reproductive rights, health equity, human rights and social justice? And how does using a human rights framework differ from other reproductive rights initiatives?
Yes, that is a lofty goal, isn’t it?! Basically, I am working with others here in the Gender and Justice Program and with many allies in the reproductive rights and justice movements to work toward the development of policy that doesn’t benefit any one group at the expense of another. That commitment involves thinking about the big picture, and the collective implications of people’s individual decisions. It also involves an understanding that everyone does not have the same access to choices or information or expression of their rights.
For example, there’s all these ways that poor women are discouraged from or punished for having more children. That happens side by side with an industry that leads to a 50% multiple birth rate for those who use IVF. So, our system punishes poor women for having children, while those who can afford it are encouraged to have several at once. And the high rate of multiple births has led to an increase in low-birth weight babies and premature birth. This has a huge impact on the infants themselves, as well as on the health care system. We have to advocate for welfare reform that provides sustainable support for poor families, and at the same time think about industry standards and safeguards that promote the health of women and children.
There also has to be dialogue and intention about where resources go. Addressing infertility means more than access to high-tech treatment; it requires investigation into the causes of infertility, particularly environmental ones because many are preventable and disproportionately affect low-income women and women of color. These are some examples of the issues we have to be considering as we craft just policies. We’re still figuring out what these policies would look like. All of this is new territory, and it’s not a quick process, especially because we’re
committed to leadership from diverse constituencies.
You asked how using a human rights frame differs from other reproductive rights initiatives. Reproductive rights in the U.S. are traditionally considered privacy issues, emphasizing freedom from government intrusion and guarantees of individual autonomy. A human rights framework means recognizing that women should have full control over everything related to their sexuality, including when and whether to have children, and to be able to do so without violence, coercion or discrimination. A human rights model goes beyond a focus on individual decision making and brings in the circumstances of women’s lives that impact their reproductive health. Human rights principles support the goals I was talking about earlier and are an important part of our framework. Using this frame also links us to the international community, and to other groups doing human rights and reproductive rights work in the U.S.
In graduate school, you conducted research on the impact of racial discrimination on health. Can you talk about your findings and if possible, what they say about health in the U.S.?
OK, this is obvious to a lot of people, but discrimination harms health. Most people who experience any form of discrimination are aware of this. But it gets dismissed in most academic and medical circles, and by the media, so this new body of research that documents the health impact of racism is important for shifting the attitudes of health providers, policymakers, and the general public. Studies have shown that experiences of racial discrimination increase stress-related problems like high blood pressure and heart disease, can lead to depression and
psychological distress, and can result in depressed immunity and shortened life span.
The World Health Organization defines health as a state of complete physical, mental and social well being, and not just the absence of disease. Health promotion is not just about medications and genes and exercise; it has to incorporate strategies that fight racism and other forms of oppression. This has to happen on many levels: within institutions, like government and universities and the medical system; and also in communities and families, where we learn by listening to adults around us talk about the world, where we see how people are treated, and where we experience privilege or lack of it. I liked my graduate program a lot because I got to see how research can
support social justice strategies.
How did you get involved in reproductive health and human rights? What are some of the moments in your life that added up to your decision to pursue the work you are doing today?
In graduate school, I did an internship in Ecuador with a NGO that focused on rural women’s sexual and reproductive health. The staff I worked with used a human rights framework. When I came home and researched the international reproductive rights field, I saw that reproductive health and rights advocates in the rest of the world use a human rights framework, too. I was really excited about this; as I was saying before, it was clear to me that a human rights model brings a much broader perspective and agenda than an individual-rights approach, which is the foundation of the reproductive rights movement in the U.S. When I graduated from my public health program, I decided I wanted to focus on reproductive rights domestically, to try to change things in my own country. Working with the Gender and Justice Program has allowed me to focus on the complex environment surrounding reproduction and how multiple systems of oppression impact women’s reproductive lives.
An early experience that was formative in my human rights development was hosting two young people as part of the Children of War Tour when I was 15. The tour was a group of teenagers from war-torn countries who were visiting the U.S. to share their stories and promote youth activism on peace issues. I remember very clearly having two young women stay with me, and hearing terrible stories about what each of the tour members had seen and experienced in their lives. But they all had so much hope, and resilience, and it profoundly impacted the way I saw the world and what I could do in it.
Why is the organization called the Center for Genetics and Society, especially considering the negative and oppressive past of eugenicists?
A commitment to preventing eugenics is one of the main reasons this organization exists. We have seen what can happen when a group of people or a government think that some humans are better than others and try to implement programs to eliminate those who are deemed “undesirable” and encourage reproduction among those who are designated as “the right kind” of person. Our name reflects our mission: we want genetic and
reproductive technologies to be used in ways that are beneficial to society, not ways that are harmful or dangerous. “Genetics and Society” means we have to find a balance around genetic technologies that works in the interest of society as a whole.
Where does the Center stand politically? Is there a presidential candidate that the Center endorses or feels supports its initiatives more than others?
We are a progressive organization committed to policies and practices grounded in principles of social justice and human rights. We don’t take positions on political candidates, though.
Is there anything you would like to add?
Assisted reproduction and stem cell research are often presented as black and white issues, but they’re really complex. They connect to racism; eugenics; our perceptions of disability; how families are valued (and whose families); the industry of assisted reproduction and its accompanying commercial aspects; and the health, integrity and rights of all women. The voices of those of us on the left are an important part of public dialogue and policy making. There’s lots of conversations we need to be having, so let’s have ‘em!

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