Title: Savior Siblings Author: Heidi Rounds Date: 2008 Sentence Description: This case is about whether Pre‐implantation Genetic Diagnosis (PGD) should be used to choose a genetically “matched” sibling to serve as an organ donor for a living sibling. Case Study: Every year thousands of people wait on donor lists to receive transplants or even to hear that there has been a possible match for bone marrow, a kidney, a heart, or a variety of other organs. In some cases people die waiting, or become too unhealthy by the time the transplant is available for it to remain a viable option. In the more recent past some families have begun to take the problem of transplantation into their own hands. Often the first place one looks for a donor is to the family. Are the parents a match, are the siblings a match, and is the daughter or son a match? If the family members are not a match then it becomes a search, often nationwide to find a suitable donor. New technology has now enabled another option for some families. In vitro fertilization as well as pre‐implantation genetic diagnosis has made it possible for families to create embryos that would be a perfect match and therefore be viable donors. Pre‐implantation genetic diagnosis is the genetic analysis of fertilized embryos to select an embryo with the desired genotype before implantation. Pre‐implantation genetic diagnosis (PGD) is a genetic selection process done outside of the woman’s body. A cell is removed from the embryo when it is at the eight cell stage and analyzed. When the procedure was first introduced it was used to screen for presence of and to prevent the birth of embryos with gene sequences linked to diseases such as Down’s syndrome, Tay‐Sachs disease, cystic fibrosis, and sickle cell anemia. PGD has now been linked to the creation of “savior siblings” who can provide bone marrow or other transplant tissues to sick older siblings. In cases where PGD is used to help family members the analysis of the fertilized embryos is two‐fold. First, the embryo is screened to ensure that it does not carry the disease that is affecting the family. Secondly, the embryo is screened to see if its stem cells would be a compatible donor. Mary Ayala and her husband Abe took a big chance to begin the process of having a new baby in attempt to prolong the life of the daughter they already had. Abe went through a reverse vasectomy, and Mary became pregnant at the age of 43. For them, the risks involved with the pregnancy were far less than the risk of losing their 19‐year old daughter Anissa. Anissa had been diagnosed with chronic myelogenous leukemia. In most cases the patient will die within three years if they do not receive a bone marrow transplant. If, however, a bone marrow transplant is performed the success rate is rated at 70%. In 1990 Marissa Ayala was born, at 14 months old when she became the bone marrow donor to her sister Anissa. Ethical Question: Should parents use PGD specifically for the purposes to conceive a child to be a donor for another child? Guiding Questions: 1. Do parents wait, possibly too long to see if a match will come up or do they take matters into their own hands to ensure that loved ones will survive? 2. The cost of PGD is upwards of $20,000 per trial. The cost makes this form of treatment available to a small population. Is it right that only those that are financially able can make this choice to save their children? 3. How might a child born as a result of PGD react later in life after hearing about why they were conceived? How will the recipient feel about their sibling knowing they were brought into the world to help them live? Would it become to the recipient a feeling of indebtedness that they would not be able to move beyond? 4. If the child is born and the transplant is made but is unsuccessful what comes of the family at that point? Will the new child be blamed for the lack of success? Will they be treated the same as they would have if the transplant were successful? If the transplant was successful, but then later in life other transplants or donations become necessary. Does this mean that the sibling born as a result of PGD is to be available and willing to undergo transplantations at anytime in their life? Are they obligated to their sibling or family member for a finite amount of time, or are they linked forever? Would the donor sibling feel they are around to provide “spare parts”, and not valued for who they are? What would happen if the donor sibling chose not to donate later in life, what if they choose to no longer accept the role of “savior” for which they were originally conceived? Teacher Resources / Background Ethical Arguments Ethical Pro (Yes)
Con (No) principle Respect for  Although the potential help the new  In June of 2000 a group of twelve committee members met and child could pose to the existing child Persons / is the motivation behind conception, authored guidelines for live organ Autonomy a parent is unlikely to then neglect donation. The conclusion of the the new child. In addition, if group was as the donor must give something was to happen and the consent, be competent, willing to existing child was not to survive the donate, free from coercion, medically and psychosocially suitable, and fully parents would then have another child to love. If parents and doctors informed of the risks and benefits. exhaust all possibilities involved in Surely a newborn baby is not in saving the child they will feel more at position to give consent, thus peace that they made every attempt violating the principle of autonomy. to preserve the life of their child. Maximize Benefits/ Minimize Harms Justice 
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Without PGD as an option for a 
transplant donor some patients will die waiting for a donor. In addition the chance of a successful donation is greatly increased by the use of a sibling match versus a match from a non‐family member. The purpose of the procedure is to prevent harm, one of the main bioethical principles. PGD gives parents a means of giving their child the ultimate benefit, the gift of life. Research shows that the PGD procedure does not seem to adversely affect the subsequent development of the embryo or the fetus. In addition the process of bone marrow donation involved minimal risk for the donor. The birth of the new child and its ability to save the existing sibling could increase the specialness of the child. Another consideration is the number of embryos that are affected in by this practice. A clinic in Chicago published data showing that in treating 9 couples whose children suffered from forms of leukemia and anemia 199 embryos were tested. Of these 199, 45 tissue matching embryos were identified for implantation and 28 of these were used in 12 separate cycles of in vitro fertilization. Only 5 of these embryos resulted in pregnancies, and 171 embryos were discarded. The harm to the number of embryos is not worth the benefit. 
Using PGD to screen for donor siblings is not frivolous use of embryos. By using PGD parents are ensured that the child they conceive will be a match for their existing child. Although unusual, parents that conceive naturally may have prenatal diagnosis to find out that the fetus is not a match and decide to abort the fetus, or in some cases continue to full term and then give up the child for adoption. With the use of PGD, only embryos that are a match are implanted negating this possibility. The cost of PGD would be far less than the cost of medical care for a patient suffering over a long period of time. One disease that can be treated by a donor match through PGD “savior siblings” requires a blood transfusion every three weeks and would cost far more for long term care than the cost of PGD to conceive a donor sibling. The use of PGD may also have social implications based on the cost. PGD is approximately $20,000. While this is less than the cost of long‐term health care, it is not a process covered by health insurance. PGD would only be available to those that have enough money to go through the process. Some families of children with terminal illness would not have the means to even consider this treatment. Other 
Perspectives 
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The instrumentalization of the child. A major ethical principle from Kantian ethics is that we always act in a way that shows people are valued in themselves and not treated as “things”. A child born of PGD as a donor could be considered a means to an end which is a violation of Kantian principles (Moral Rights/ Duties) Background – Extra Information for Teachers References Authors for the Live Organ Donor Consensus Group (2000).Consensus Statement on the Live Organ Donor. Journal of the American Medical Association. 284, 2919‐2926. Boyle E & Savulescu, J (2001). Ethics of using preimplantation genetic diagnosis to select a stem cell donor for an existing person. BMJ. 323, 1240‐1243. Brody, J (2007, September 4). For living donors, many risks to weigh. New York Times Javid, F. Family Uses Genetic Engineering to Save Daughters Life. December 21, 2007. http://abcnews.go.com/Health/story?id=4038908&page=1 Morrow, Lance (1991, June 17). When one body can save another. Time Magazine. Pennings, G, Schots, R, & Liebaers, I (March 2002). Ethical considerations on preimplantation genetic diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling. Human Reproduction. 17, 534‐538. PGD. Retrieved July 23, 2008, from GeneticsandSociety.org Web site: www.geneticsandsociety.org/article.php?list=type&type=82 Picoult, J (2004). My Sisters Keeper. New York, New York: Washington Press. Reilly, P (2006). The Strongest Boy in the World, How Genetic Information is Reshaping Our Lives. Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press. Robertson, J (2003).Extending preimplantation genetic diagnosis: the ethical debate. Human Reproduction. 18, 465‐471. Truong, R, MD. (2005).The Ethics of Organ Donation by Living Donors. The New England Journal of Medicine. 353, 444‐446.