Readers who know anything about me at all know my wife passed away a little over four years ago from Huntington's Disease (HD), a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person's physical and mental capabilities in the prime of their life and it has no cure. HD is the quintessential family disease because every child of a parent with the disease has a 50/50 chance of inheriting the gene and HD. Today there are around 30,000 symptomatic Americans and about 200,000 potential cases. Therein lies one of the primary issues with HD - our wonderful for-profit medical system and so-called Big Pharma simply have little incentive to work on solving HD. It is as if President Trump's southern border wall has been erected to hamper HD study. HD families have no Michael J Fox or Stephen Hawking to help focus attention on HD. Woody Guthrie is probably the most famous person to have ever had HD - luckily his son Arlo did not inherit the gene. Woody died in 1956.
Some of you will say that HD afflicted people simply should not have children. That may indeed be correct but the genetic test that is 100% accurate was not developed until 1993. My children were born in 1977 and 1982. Lynn was tested and the results of the pre-genetic test were negative, Doctors basically did an MRI and saw no trace of HD (brain shrinkage). Oops - 1n 1999 some friends of ours noticed some odd behavior and strange physical traits in Lynn. She was genetically tested and I will never forget the phone call from the Neurologist's office. I answered the phone at work and there was silence on the other end. Finally the caller said I am very sorry but Lynn has HD.
She lived until 2014, but, we had two children. You can see where this is going. Our daughter was diagnosed with HD last week after the genetic test was administered. For what it is worth, the older test came back negative 4 months ago.. Each of her three children has a 50/50 chance of inheriting the defective gene. Our son refuses to have the test because he fears it will destroy his attitude about life and he is trying to assure his family has a stable future whether he is there to share it with them or not. I understand his reticence as Lynn gave up on life almost immediately after her diagnosis. It was part of the progressive degeneration of her brain.
So what does this have to do with the weekly 2-on-1 blog? Enter CRISPR. If you wish to examine the technical jargon please click CRISPR. Long story short, CRISPR has the potential to eliminate some 6000 genetic disorders - including HD. 60 Minutes has done a story on CRISPR.
Genetic engineering is here and it is real. With a bit of luck my six potential HD inheritors will benefit from CRISPR if we can manage to navigate the slippery slope that genetic engineering has become. But, to ignore the benefits available through the judicious use of genetic engineering is simply immoral in my opinion. Opponents claim genetically modifying embryos to prevent disease is tantamount to playing god. I say if god screwed up, correct the mistake. Opponents say genetic engineering is unnatural and does not take into consideration the desires of the future generation. I say so what? Is not setting a broken arm unnatural? Is not plastic surgery unnatural? Is not transplanting organs unnatural? What about artificial limbs? And who would not want to have HD removed from their life if given a chance? Perhaps some of the faithful might be willing to risk their life on the power of prayer. or god performing a miracle. I am not one of the faithful.
To see what Ramana has to say on the matter please go to Ramana.
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