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July 8, 2009

by Jennifer Lahl

side bar side bar side bar side bar side bar side bar side bar side bar side bar My Sister's Keeper, Jodi Picoult's 2004 novel, just came out on the big screen.  Joining other films that address bioethical issues such as Gattaca, Million Dollar Baby and The Island, My Sister's Keeper takes on a real-life issue commonly 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 using the egg from the mother and the sperm from the father.  Then, using pre-implantation technology, the embryos are tested, and the one deemed genetically compatible is implanted into the mother's womb in order for the embryo to grow and develop.  Once that baby is delivered, the cord blood is often collected because it provides a perfect match for the sick sibling.  Later on, as shown in My Sister's Keeper, 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 remains the most famous 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 died if not for a matched donor.  Doctors created 30 embryos from four rounds of in vitro fertilization (IVF) to finally produce Adam, who was the match Mollie needed. 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.  Although the removed embryos die because a lethal dose of potassium chloride is injected into the fetal heart, we politely talk about "selective reductions".

"Family balancing", "social sex-selection" and "gender selection" are euphemisms used to discuss the use of these technologies to intentionally select your children based on the parents preference for a boy or a girl.  Of course, these euphemistic phrases are used to play down the fact that people are ordering—that is shopping for— their children purely based on desired characteristics.  If you want a boy, you screen the embryos, select the male embryo, and discard the female ones in order to "balance" your family.  Heaven forbid we should have unbalanced families!

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.  Social sex-selection is just another euphemism with deadly ramifications. Doctors in the United States are selecting healthy babies for termination because they are the wrong sex.  Surely these are symptoms of a culture in decline!

Anna Fitzgerald, the self-described designer baby in Picoult's story—designer not as in Prada, or Coach, or Gucci, but more or less like a cafeteria-style menu selection—was conceived for the purpose of being the donor for her sister, Kate.  Kate, diagnosed as a young child with leukemia, needs a bone marrow transplant, but none are available.  Family members are tested, but no one is a match.  She is dying and time is running out, so the family's physician recommends something "off the record."  He suggests creating a donor sibling.

In the opening of the film, Anna is not quite accurate in her description of how she was made.  She 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 and accuracy of the procedure.  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. This is high-tech eugenics: being selected only because of your "useful" genes or being terminated because you have the wrong genetic make-up.

From this point on, the film does a good job of addressing some real issues head on, showing the complexity of the ethical realities, while fortunately not leaving the audience with a romanticized "happily ever after" ending.

The film poignantly shows the absolute devastation parents fell when told that their child has a dreadful disease that will most likely kill her.  There is no sugar coating of the stress that is placed on a marriage or other children in the family, and the strained family dynamics when a child is seriously or chronically ill.  That means gut-wrenching decisions, and the constant suggestion that all hope is lost and all you have to grasp for are straws.

The film deals directly with Anna's life and experience of being put through numerous medical procedures from the time of her birth culminating in an immanent kidney donation procedure as her sister nears death..  She knows that she is a product who only exists because someone else desperately needed her—or parts of her at least.

Here is the heart of the ethical matter at hand. Technology, apart from any ethical or moral compass, 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 the specific characteristics of that life to save another.

Perhaps even more worrisome is the reality that other lives were created, and then destroyed because they did not perfectly meet the need of another.  Realistically, there could be several embryos which provided the genetic match, but since only one is needed; even embryos which make the cut are discarded.  In our desire to relieve suffering, to seek healing and cures, and to avoid death, we have crossed a bright ethical line by seeking to use one human life for the good of another.

Where does this line of moral reasoning end?

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.  The World Medical Declaration of Helsinki claims that, "the duty of the physician is to promote and safeguard the health of patients." Isn't there an immediate conflict of interest between the doctor and the patient, not to mention the savior sibling, who has nothing to gain, but perhaps is exposed to medical risk while not even being a patient?

Creating a savior sibling is a direct violation of the dignity of that person.  It treats human life as something to be made, manufactured and used as a commodity.

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, the savior sibling has been denied the full rights to her own body, and to willingly and freely be her sister's keeper.

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Listen to Jodi talk about My Sister's Keeper
Jodi joins PBS anchor Bob Abernethy on WNET's Religion & Ethics NewsWeekly
The Age of "Savior Siblings"
Ageless Bodies-Happy Souls by Leon Kass
The Universal Declaration of Human Rights
Ethical Principles for Medical Research Involving Human Subjects
The Match: The Katie Trebing Story
 
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We live complex lives. We strive to sort out priorities that sometimes conflict or seem incompatible. A moral framework is needed to help us understand the reality around us. Our Judeo-Christian heritage provides a framework to help us comprehend the choices we make and the conflicts that arise over them. It is not only the main source of our spiritual values, but also many of the secular values we depend on.

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  Jennifer Lahl
Jennifer Lahl, is founder and national director of The Center for Bioethics and Culture Network, an organization working to shed light on the bioethics issues within our culture that most profoundly affect our humanity, and advancing the voice of a morally responsible science that respects the inherent value of humanity and that celebrates its beauty and complexity. Lahl couples her 25 years experience as a pediatric critical care nurse, hospital administrator and senior-level nursing management, with a deep passion to speak for those who have no voice. Lahl's writings have appeared in various publications including the San Francisco Chronicle, the Dallas Morning News and the American Journal of Bioethics. As a field expert she is routinely interviewed on radio and television including ABC, CBC, PBS and NPR and called upon to speak alongside lawmakers and members of the scientific community, even being invited to speak to members of the European Parliament in Brussels to address egg trafficking. She is founding director of Every Woman First and serves on the North American Editorial Board for Ethics and Medicine as well as Board of Reference for Joni Eareckson Tada's Institute on Disability.
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