Dear Friends

I am gathering views about Pre-implantation Genetic Diagnosis (PGD) for H.D..

This technique uses IVF (In Vitro Fertilisation) to create embryos in the very earliest stages of development (6-10 cells) and tests for the gene. A number of unaffected embryos are then implanted in the womb.

I would like to hear your views on PGD for H.D..

For example:

Does this offer hope of an H.D.-free future, or does it devalue the lives of existing sufferers?

Would you want to use this technique or would you take the risk of passing on the gene in the 'natural' way?

PGD may be available to those who are at 50% risk or less but in this case on average across the population, 50% of rejected embryos would be unaffected; if the prospective parent were at 25% risk then 75% of the rejected embryos would be unaffected, across a population.

Is this disrespectful to life? Should the procedure only be available to those who have tested positive?

Please write back and let me know.

Your comments may (anonymously) be used in a speech by the HDA in the UK so if this gives you a problem please indicate that in your response.

Many thanks

All the best

Chris Barker
Dorset, England

I have a 23 year old daughter at risk because my husband and I were unaware that his mother had Huntington's Disease. She is the first in her large family to have the disease so it may be a spontaneous mutation or it may be that one of her parents fell into the intermediate CAG area and avoided symptoms. My husband also now has Huntington's Disease. My personal view is that I would not risk bringing a child into the world with the Huntington's Disease gene. This view is shared by my daughter.

I don't believe that PGD is disrespectful to the lives of people with HD. No one wants this gene and everyone I know who has it is ecstatic when friends and family members at risk test negative. Were I a younger wife with an asymptomatic husband I would certainly be using PGD to ensure a child without the HD gene. I also think it's a valuable medical technique for people who are not yet ready to know their own gene status but wish to make sure they don't pass along the gene.

Chris

There have been many families who have, successfully, used this procedure to have children who were not at risk for inheriting Huntington's Disease. Those families, that I am aware of, had one partner who was positively diagnosed with HD.

I can't speak first hand on whether this would "de-value" the lives of those who have Huntington's Disease since I do not have HD. But I can say that my daughter, Kelly, who died from HD once said she would not have wanted to bring a child into this world who would have gotten the disease. Although Kelly loved life, she said it would have pained her too deeply to see her child go through what she herself went through.

People who are at risk, who do not want to be tested, have very difficult
decisions to make with respect to having natural children of their own, or not.
Yes, as you suggest, there is the possibility a rejected embryo may be disease-free. However this is a very personal decision, one not easily made, and is
matter of choice for the families involved. Those decisions should be respected and not questioned by others who have not been in the same position.


Warmest regards,
Jean E. Miller
Clearwater, FL.

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