Choosing the Future: Morality and the New Genetics
Listed below are several cases, some of we which hope to draw on for purposes of active interactive discussion during the seminar on Saturday, March 28. Please look these over in advance, discuss them with friends or family, and bring your informed views on each case to the seminar. We may not get to all these cases, but we hope they stimulate your thinking and conversations. There will be no grading of the views you express at the seminar!
Quandaries of Genetic Testing: Duty to Warn?
Ryan, age 4, is brought to the medical genetics clinic by his 27 year old mother, Janet, for evaluation of developmental delay and hyperactivity. He has undergone a lot of tests and results are all normal. She and her husband, Terry, very much want another child.
The family history is unremarkable with the exception of a six year old son of one of Janet's cousins who is apparently 'slow.' Janet reports her family does not get along and she has had little contact with her mother's side of the family. Her parents are both deceased. A friend told her recently that Janet's 25 year old sister, Sandra, is planning to become pregnant.
It is determined that the cause of Ryan's delay is Fragile X syndrome. As its name suggests, this condition is a sex-linked disorder that is carried by females and most seriously affects males, in whom it can cause severe mental retardation. After discussing the genetics of Fragile X syndrome and risks to other family members, the medical geneticist asked Janet to notify her sister of the risks to any of her children and alert her to the availability of prenatal testing. The following week the geneticist calls Janet. In the course of the conversation, Janet states that she has not called her sister and does not intend to.
A married couple are both "Deaf of Deaf." They inherited the condition of deafness from their parents and were raised in non-hearing households. Currently, not one of the more than 100 genes that can cause hereditary deafness has been identified, but some believe that a decade from now, they should all have been sequenced. At that time, this couple visits a genetic counselor with an unusual request. The woman is pregnant and they wish her fetus to be tested for the "deafness gene." The counselor believes she understands their concern, and as a matter of course, asks if they plan to abort any fetus who will be deaf. The parents respond, "Of course not!" If the fetus has the gene for deafness, they say, they plan to carry it to term. It is a "normal" hearing child they wish to abort. They explain their reasoning to the astonished counselor by saying that they feel more comfortable having a child "just like themselves."
Alzheimer Testing at Silver Years
Testing for a blood protein factor, Apolipoprotein E (APOE), may indicate that an individual has two copies of one form (allele e4) of the gene that predisposes one to Alzheimer disease. Such persons have 5-30 times the average risk of developing Alzheimer disease.
Managers of the Silver Years Retirement Community near Pines Bluff decide to require the test for entrance. They argue that people with Alzheimer disease not only cost the retirement community more in terms of nursing care (a cost that is spread among members through high entrance fees), but also have a demoralizing effect on the general atmosphere, thereby discouraging new entrants. In most states, retirement communities may set their own health standards for entrance. The APOE test, however, does not provide a certainty that someone will develop Alzheimer disease; many people with two APOE variants remain normal. Using the test will screen out many persons who are genetically unfortunate but will never develop the disease. However, it will improve the community's risk pool. If most retirement communities institute testing, these people will be penalized for having the "wrong" genes. Even those who would actually develop Alzheimer disease may die of other causes before they show the first Alzheimer symptoms. Is it fair to exclude people on the basis of a genetic test, in the absence of symptoms or of certainty about whether, and when, they will develop the disease? On the other hand, is it fair to make everyone in the community pay the high costs of nursing care for a few?
Ann and Carl Bradley of Pines Bluff, both nearing 70 years of age, had been planning to seek entrance into the Silver Years Retirement Community. They had been discussing this for some time with each other and with their friends at the local church. Both agree to take the APOE test. Ann's profile is acceptable (alleles 3/2) but Carl's indicates a poor prognosis (4/4), and they are informed that as a couple they would not be granted admission. Both are devastated, and strongly suspect that their friends will know the reason why they will not be carrying out their much-discussed plans. Carl has become severely depressed, and there are strong tensions developing in the marriage. Is it fair that susceptibility tests such as these may be used with significant negative impacts on individuals and families, including their privacy?
June and Jerry Smith, ages 30 and 31, very much want a child. Unfortunately, last year Jerry underwent orchiectomy (castration) following diagnosis with testicular cancer.
June and Jerry are uncomfortable with the alternatives of sperm donation or adoption.
They learn of research at the Los Angeles Center for Reproduction. After five years of research, scientists there are prepared to offer the option of cloning to couples like June and Jerry. They are confident of the safety of the procedure.
A cell will be taken from Jerry's body. Its nucleus will be inserted into June's ennucleated egg cell and the resulting embryo will be placed in her womb, as in a standard IVF procedure.
The child born to June will be Jerry's twin. Although the couple is not entirely comfortable with this idea, they feel it is the best alternative they have for ensuring some genetic continuity in their offspring.