My Sister’s Keeper

What does it say about a society which permits, no, which condones the use of medicine and technology for the sole purpose of creating human life just to destroy it? It says we are a culture that has morally lost its way.

My Sister’s Keeper, Jodi Picoult’s novel turned film takes on an important and real-life issue known as “savior sibling.”

A “savior sibling” refers to the creation of a genetically matched human being, in order to be the savior of a sick child in need of a donor. This requires creating human embryos in vitro, then, using pre-implantation technology, the embryos are tested, and the one deemed genetically compatible is implanted into the mother’s womb. Once that baby is delivered, the cord blood is collected because it provides a perfect match for the sick sibling. Later on, bone marrow, blood, or even organs, can also be taken and used for transplantation for the sick sibling.

Savior siblings are already a reality, and the use of such practices in the United States is not prohibited. Adam Nash is a well-known savior sibling in the U.S. Adam was born in 2000 to rescue his sister Mollie, who was diagnosed with Fanconi’s anemia. Mollie would have otherwise succumbed to death if not for a matched donor. The Nashes created 30 embryos and went through four rounds of in vitro fertilization (IVF) to finally produce Adam. Of course, the ethics of the disposition of the 29 other embryos is quite problematic. Adam was chosen, 29 other human lives were not, simply because their DNA was not able to rescue Mollie from a deadly diagnosis.

In Picoult’s story, the film opens with a voice-over narration of Anna Fitzgerald, the savior sibling. Anna describes herself as a “designer baby.” Note to self: Beware of euphemisms. Euphemisms are rampant in the world of IVF. Selective reduction refers to a situation in which many embryos are transferred into a mother’s womb, and then if too many of them implant, the physician, (with the parents’ consent), removes the “extra” embryos. Family balancing, social sex-selection and gender selection are terms used to discuss the use of these technologies to intentionally select your children based on their sex and your preference for a boy or a girl. The practice of social sex-selection is banned in Canada, so Canadians who wish to order the sex of their children come to the U.S. Surely these are symptoms of a culture in decline!

Anna Fitzgerald, the self-described designer baby — designer not as in Prada, or Gucci — was designed for the purpose of being the donor for her sick sister, Kate. Anna suggests that the doctors took the best part of her mom’s DNA and the best part of her dad’s DNA and voila — the perfect match was made. If we as a society are going to be able to have an earnest conversation on the ethics of creating savior siblings, we must be intellectually honest with the facts. Embryos — as in multiple embryos, were created, and then tested, and only the one that would provide the genetic match was brought to term. The other embryos were discarded.

And here is the heart of the ethical matter. Technology, apart from any ethics, has progressed to the point where, for the first time in history, we are able to intentionally create human life and allow it to fully develop solely because we need that life to save another. And perhaps even more worrisome is the reality that other lives were created and destroyed because they did not meet the need of another. In our desire to relieve suffering, seek healing, and avoid death, we have crossed a bright ethical line by seeking to use one human life for the good of another.

Whether we look for moral guidance from our religious texts or to secular historical documents, it is important that we as a society remain rooted in the belief in the inherent dignity of all persons. The U.N. Declaration on Human Rights warns that wherever there is “disregard and contempt for human rights,” “barbarous acts” are sure to follow. Surely, the rights of the savior sibling have been denied when from their first breath they are being used as a means to an end.

Early in the film, Anna hires an attorney and announces, “I want to sue my parents for the rights to my own body.” From the moment of birth, she has been denied the full rights to her own body, and to willingly and freely be her sister’s keeper.

Pass the Smelling Salts, Please

OR . . . why do women faint when I show Eggsploitation?

The first time I screened Eggsploitation on a university campus was at Harvard Law School. During the screening, a young female student walked out of the auditorium and proceeded to faint.  I happened to be outside the auditorium meeting with a colleague (I’ve seen the film many times, so I typically step outside while the film plays). As a nurse, I immediately saw the warning signs – woozy, white as a sheet, things just didn’t look all right with this woman from my quick assessment.  I intervened:  Pulse, check.  Breathing, check.  When she came to, I asked her all the basic questions.  Are you sick? No. Do you have any medical history? No.  Did you eat today? Yes.  Why do you think you fainted?  I don’t know . . .

Then I received an email from a professor who ordered a copy of the film to show in her class.  She emailed me to say she had to stop the film halfway through because two women in her entire class of female students had fainted.  She wanted me to know of this reaction so I could warn others. She chalked it up to the fact that the week before, she had shown the film “The Coat Hanger Project” and felt this was a carryover response from that traumatic film.

Next stop: Yale Law School, where a bright, energetic female student who then headed up Women’s Law at Yale had really pulled together a phenomenal, standing room only showing.  I prepped her that “women have been known to faint,” but she assured me, “This is Yale Law School, and we are tough here.”  So, I’m outside the room, talking with my colleague from NOW, who does many screenings with me, when two women walk out of the room and proceed to go down in a heap on the floor.  Not one, but two “tough” Yale law students.  They are fine, and we get them on their feet and send them on their way.  Neither ventures back in to finish the film.

Same thing happens at University of Virginia Law School.  Two women leave the auditorium to go outside and sit down on the floor.  The nurse in me instructs them to put their heads down between their knees.  Drink some water.  Pale pasty white faces begin to regain color, and I send them on their way, back to their dorms.

Then just this past week, I was premiering my latest film, Anonymous Father’s Day, at the SoHo Gallery for Digital Art in New York City, but was also doing many showings throughout the week of Eggsploitation, too.   While I was upstairs in the gallery, the film was being shown in the theatre downstairs, and a young woman came up the stairs, looking white as a sheet.  I took one look at her and knew she was having a strong reaction to the film.  The gallery curator and staff came quickly and, fortunately, caught her before she landed hard on the floor.

So, as a nurse, my observations are these:  Young women faint.  Older women don’t faint.  Men don’t faint.  The exact women who are being targeted to “donate” their eggs faint.  And they faint because they most closely identify with the women in the film.  They need money, and they think they are helping someone while getting money that they feel they desperately need (it’s rare that I meet an altruistic egg ‘donor’). They identify with the women in the film who get so sick and feel alone.  And they are really bothered by the needles, the drugs, and the outcomes of these women’s lives.

Jennifer Lahl

I was happy to receive Marjorie Campbell’s kind invitation to join her team here at New Feminism. Marjorie and I have been meeting, thinking, and discussing many things as it relates to our bodies, our ability to procreate, and the impact that feminism has had in shaping the landscape for where we find ourselves today. Our conversations have been very helpful to me as we have some shared experiences in our past; old guard feminists looking to rethink the statement ‘you’ve come along way baby’, spiritual wanderers (rebels) who have found rest again in our faith, feeling we are at a time in our life when we were ready to spread our wings and embrace a new season in life, a new calling if you will. So, in this spirit of camaraderie, I will be writing here, mainly addressing things around infertility and reproductive ethics and technologies, although I have many interests in the whole field of bioethics, as I have my master’s degree in bioethics.

My personal interest in matters on infertility, assisted reproductive technologies, and modern day baby-making, has been shaped by many and my voice comes from many rich experiences in my life. I am first a woman with a keen interest in our bodies and health. I am a wife and a mother, so my thoughts have been impacted by what I have tried to live and teach at home. I spent 25 years working as a nurse, and am committed to patient advocacy; informed consent, evidenced-based medicine and medical ethics rooted in the ancient Hippocratic tradition—first, do no harm. The Georgetown mantra of beneficence, non-maleficence, autonomy and justice have no meaning if not rooted in a principle that recognizes the dignity and worth of every individual.

I came into the area of reproductive technologies through a sort of backdoor way. Living and working in California, I found myself entering the field of bioethics at the height of the embryonic stem cell and human cloning wars. How was it that we came to be debating over a half a million surplus frozen embryos in the United States? Why and when did the human embryo become such a prize to the stem cell researcher? It was through digging into these questions that I really uncovered the fertility industry and how uncritically we had accepted these technologies which allowed Louise Brown, the first “test-tube” baby, to be born, in order to help Mr. and Mrs. Brown have a baby. Through my writing and speaking, people began to find me – thanks to the internet and Facebook. They told me their stories which led me to make films. Three at this point and counting! First, I made Lines That Divide: The Great Stem Cell Debate. Then I made Eggsploitation, which won best documentary in the California Independent Film Festival in 2011 and in December of 2011, I released Anonymous Father’s Day which tells the stories of children, now adults, who were created via anonymous sperm donation. These films have had a big impact on engaging the public in conversation. While I have briefed legislators on Capitol Hill and at the state level, and testified at the European Parliament at Brussels on Human Egg Trafficking, I have found that through film, telling authentic and real people’s stories, I have been able to change people’s attitudes and thinking. Like the young woman at Loyola-Marymount who came up to me after watching Eggsploitation and said, I’m so glad I came tonight, I was just about to sell my eggs to pay my graduate school tuition. Infertility is nothing new. It has been with us since the beginning of time. I understand the heartache of the barren womb, as we recall Rachel crying out to God, “Give me children, lest I die”. What is new, however are these modern day technologies which seek to address the barren womb and make baby-making available to all (is 50 the new 30 for motherhood?) So, maybe with all of these new technologies, it is time for a New Feminism. I’ve always said, women (me included) have a unique role in pointing us in the right direction. For such a time as this, I’m here to do my part.