Group Discussion and Reporting Out of Questions:

Directions:

The audience is divided into several groups of eight participants. Each group was given a set of "Questions/Issues for Discussion", 25 minutes of discussion time followed by a short report out period.

Questions/Issues for Discussion:

1. Is there a categorical (qualitative) difference between genetic information (quantitative) and all other types/kinds of medical information? If not, why not? If there is, why?

2. A blood test was ordered by a cardiologist for a 51-year-old woman to reveal whether or not she had inherited a gene indicating a particular susceptibility to heart attacks. The test showed she had two copies of a gene, called Apo E4, which increases the risk of heart disease by 30-50 percent. Then the patient mentioned that she had another (slight) problem: her memory was failing. The physician was shaken. Apo E4 is not merely a factor for heart disease. It also predicts risk of Alzheimer's disease, and people with two copies of the gene have perhaps as much as a 90 percent chance of developing the disease by the age of 80. This information is not sought by cardiologists treating heart disease. Nobody seems to know what to do with it. The gene predicts susceptibility, not certainty. Does the cardiologist really want to tell her patient (whom she is working up for a cardiac condition) that she possibly has a 9-out-of-10 chance of developing Alzheimer's disease, when there is nothing medicine can do about it? The indisputable value of Apo E4 testing is in assessing the risk of heart disease. For incipient heart disease, there is something to be done: for example, patients can take cholestrol-lowering drugs.

There are four variations of the ApoE gene. Apo E1, E2, E3, and E4. People inherit one copy of the gene from each parent. People who inherit two copies of Apo E4 have about six times the normal risk of developing Alzheimer's. Those who inherit one copy of ApoE4 and one of another Apo E variant have about a threefold increased risk. Those who inherit two copies of ApoE variant, in contrast, may be protected from Alzheimer's.

How does the cardiologist proceed in telling/withholding information from a patient more or less at risk for a disease that can neither be prevented nor effectively treated? Why?

3. In 1983, a group of Orthodox Jews in new York and Israel initiated a screening program with the aim of eliminating from their community diseases transmitted as recessive genes. The group called itself Dor Yeshorim, "the generation of the righteous."

Because Orthodox Jews do not approve of abortion in most instances, the program does not make use of prenatal testing. Instead, high-school students are given a blood test to determine whether or not they carry the genes for Tay-Sach's, cystic fibrosis, or Gaucher's disease. Each student is given a six-digit identification number, and if two students contemplate dating one another, they are encouraged to call a hotline. They are told either that they are "compatible" or that they each carry a recessive gene for one of the three diseases. Couples who are carriers are offered genetic counseling.

During 1993, 8,000 people were tested. Eighty-seven couples who were considering marriage decided against it, after they learned that they were both carriers of recessive genes. The test costs $25.00. HHS subidizes the testing program.

The tests were initially only for Tay-Sach's, but over time the other two diseases were added. Current plans are to include tests for yet other diseases. Some critics regard it as a mistake to have moved from testing for almost invariably lethal, untreatable diseases like Tay-Sach's to testing for cystic fibrosis. Individuals may feel pressured into being tested, and those who are carriers of one or more disease-predisposing genes may become unmarriageable--social outcasts. Considering that genes for most diseases manifest themselves in various degrees of severity, may individuals may suffer social rejection for inadequate reasons.

For example, Gaucher's disease, which involves an enzyme defect producing anemia and an enlarged liver and spleen, manifests itself only after age 45 in half the diagnosed cases. Further, although the disease may be fatal, it often is not. There is now a treatment: costing about $300,000 per year, per person.

Questions:

1. Is the Dor Yeshorim screening program a form of eugenics? If so, does this make it unacceptable?

2. Is the program a good model for a national screening program? If so, Why? If not, Why not? What is the difference between screening and testing?

3. Is it reasonable to test/screen for non-lethal genetic diseases?

4. What are the dangers inherent in any screening program?

5. Does the availability or the cost of treatment influence your decision whether or not to test?

Discussion Group Responses


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