Memories of Max - A Father's Story

Chapter 14 - Cancer Echoes

"Whereas you had been coping with your lives without this knowledge, this might not be the case based on the information we have given you. You may think that it stops there. It does not. Even if you were prepared to countenance this knowledge then the next question would be the welfare of Paula. If one of you proved positive for the p53 gene mutation then there is the question of whether Paula has inherited this defect. If one of you tested positive then there is a 50% chance that she might also have inherited this defect. Yet again a very human reaction would be to demand a test on Paula. Let us say that one of you proves positive and Paula also proves positive. What has been gained? Nothing. There is no material benefit to anyone and there would be a lot of misery for everyone."

"All this suffering would be based on a piece of information. As a family you have huge burdens at present just dealing with Max's very rare and extreme condition and further stress is not something I would recommend."

This was very sobering. Suddenly we had been plunged into a complex world which I could never have imagined.

"If he proved positive, could you test Paula without testing us?"

"No. We would have to prove the link back to you as parents before we could justify testing Paula. But there is more. I talked earlier about the moral and ethical implications of performing the test, but there are also very practical reasons for not performing the test. If either of you, or Paula test positive then there are implications regarding any insurance policies. By law you are obliged to tell insurers of any material facts which might affect your insurance. A positive p53 result would be such a fact. This might mean that you could no longer get life insurance, your mortgage also may then become invalid because there is no guarantee that you will live to be able to meet the commitment to the loan. Health Insurance would become invalidated. We are looking at a situation where a fact which helps no-one could lead to the breakdown of your family and the loss of your home. What I must also stress is that a positive result is just information. We do not know the precise implications of a defective gene in the formation of cancers. If any of you tested positive and did not develop cancer then the pointlessness of this information is further amplified."

At that point we decided not to put forward Max's blood for a test. Sara and I later changed our minds.

"We discussed testing Max for a p53 mutation and based on what you told us we decided not to take the test. We have changed our minds and want to put forward a suggestion to you."

"Go on."

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