Amy and John

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Amy and John are a young couple with a five year old daughter Abby. Amy also has a nineteen year old son, Brian, from a previous relationship. They had planned on having a large family. Abby was diagnosed with leukemia when she was two years old. She has had three surgeries and is currently on the transplant list for a bone marrow transplant as well as a new kidney. A bone marrow transplant would most likely put her in remission enough to receive a new kidney. Abby is on dialysis six days a week and spends most of her time in the hospital. Abby has never been to preschool and hardly plays with children her own age, except for in the hospital daycare, when she is well enough to go there.

            Neither Amy nor John are blood matches for Abby. Brian left home when he turned eighteen, has not been tested as a possible donor, and has not made contact with the family for four months. No other close relatives are match for Abby.

            Prior to Abby getting sick, Amy and John discussed having another child. Now however, Amy and John approach Dr. Johnson, a fertility specialist, to help them have another child. They want to select various aspects of the fetus. Specifically, they want to select for a child that would have the same blood type as Abby in order to use the cord blood from the birth as a marrow transplant for Abby. They also hope that the new baby will be able to donate its kidney to Abby at a later date. During her initial meeting with the couple, Dr. Johnson notices that John does not talk much and when asked direct questions he tends to direct them towards Amy or answers with one word answers.

This concerns Dr. Johnson and she decides to sit down with Amy and John separately. When she talks with Amy, she can tell that this is their last option to save Abby’s life and Amy is clinging to the only hope she has left. Amy is well within child bearing years and having another child would pose no immediate health risks to her or the potential baby. Amy wants to begin this process as soon as possible and wonders exactly when they can begin. However, during her discussion with John, Dr. Johnson has to ask him a lot of questions before he finally blurts out that he is not alright with designing a child to be used to save Abby. He was raised a staunch Catholic and he believes that every life is sacred. He is concerned about the eggs that will be lost in the process and the potential lives they could have been as well as the idea that their new child will be used as a commodity. He states that he knows he and Amy will love the child regardless of the outcome but he is concerned about Amy’s motivations behind having this child. He is too nervous, however, to talk with Amy about his concerns and problems with the creation of their next child because he fears she will leave him if she thinks he is not on board. He is also afraid of the guilt he will feel if he does not do everything possible to save his little girl. However, he swears that he cannot tell his wife about his feelings and asks Dr. Robinson to keep them confidential. Dr. Robinson calls the couple into her office the next day to discuss the options available to the family. As Dr. Robinson, do you offer to help them create a baby with the desired blood type?

-Written by Kate Sulkowski

Jacob and Anya

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Jacob and Anya were high school sweethearts and went to college together.  After college Jacob got a job in marketing, and Anya went on the law school.  Two years after graduating college, Jacob and Anya were married.  They decided that it would be best if they waited to have children until after she completed her law degree.  After finishing law school, Anya and Jacob decided that it was now time to start trying for a family, since they had decided that they wanted to have three children.  They tried for over a year and a half before deciding to consult with a fertility specialist.  Dr. Adams eventually recommended in vitro fertilization, and implanted Anya with four embryos, of which two were successful.  Jacob and Anya were elated; they were finally going to be able to start their family.

            When Anya was twelve weeks pregnant, Jacob’s mother admitted to him that he had an older brother who had died before he was born who had Duchenne Muscular Dystrophy.  Jacob was devastated, and immediately asked for the twins to be tested for the disease using amniocentesis.  The twins were genetically tested for various diseases in addition to Duchenne Muscular Dystrophy.  While neither of the children came back as a carrier for Duchenne Muscular Dystrophy, one of the fetuses came back as a carrier for down syndrome.

            Jacob declared that he believed that they should terminate the child with the down syndrome, because he thought that it was wrong to knowingly have a child who would be significantly affected by a genetic disease.  He further stated that they ought to consider their healthy child who would not get as much attention, if they had to constantly care for their disabled child.   Anya did not know what to do, while she understood Jacob’s argument, she was torn.   However, she eventually decided that it would be better for their family and their future healthy child to terminate the pregnancy for the child with the down syndrome gene.  The physician would have been willing to terminate the pregnancy in the case of Duchenne Muscular Dystrophy, because of the hardships on both the parents and the child.  However, the physician  does not feel right about aborting a child with down syndrome, since he has a child which is developmentally delayed.  Should the doctor preform the abortion on a fetus?

--Written by Amanda Zinger

Stephen

Stephen is 28 years old. He is becoming more and more concerned about his increasing muscle weakness. He shares his anxieties privately with his GP who refers him to the hospital for further tests. These confirm that Stephen is suffering from Myotonic Dystrophy. This means that over the years his muscles will weaken and he may have other physical and mental symptoms. However, his consultant assures him that at least for the time being, this condition should not affect his life too much. Myotonic Dystrophy is a disease that is inherited. This means that one of Stephen's parents must carry the defective gene that is causing the disease. It could mean that many other members of the wider family could be affected. Even if their own condition is mild, they could pass it on to their children in a very severe and even fatal form.  Stephen’s physician advises that he tell his family about their risk of MD, but Stephen claims that this information is private and he does not want to tell his family.  Stephen and his wife are also planning to have children, but Stephen is afraid that his wife, who has always dreamed of having children, will leave him if she finds out about the disease. Stephen’s physician is unsure if he has the right to tell Stephen’s family and wife about his condition.

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*http://prs.heacademy.ac.uk/view.html/prsdocuments/52

 

John

John, a 32 year-old lawyer, had worried for several years about developing Huntington's chorea, a neurological disorder that appears in a person's 30s or 40s, bringing rapid uncontrollable twitching and contractions and progressive, irreversible dementia. It leads to death in about 10 years.

John's mother died from this disease. Huntington's is autosomal dominant and afflicts 50% of an affected parent's offspring. John had indicated to many people that he would prefer to die rather than to live and die as his mother had. He was anxious, drank heavily, and had intermittent depression, for which he saw a psychiatrist. Nevertheless, he was a productive lawyer.

John first noticed facial twitching 3 months ago, and 2 neurologists independently confirmed a diagnosis of Huntington's. He explained his situation to his psychiatrist and requested help committing suicide. When the psychiatrist refused, John reassured him that he did not plan to attempt suicide any time soon. But when he went home, he ingested all his antidepressant medicine after pinning a note to his shirt to explain his actions and to refuse any medical assistance that might be offered. His wife, who did not yet know about his diagnosis, found him unconscious and rushed him to the emergency room without removing the note. What should the care team at the emergency room do?

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-->http://depts.washington.edu/bioethx/tools/cecase.html