Ok, my big point is this. I don't believe that we are capable of advancing gene-based technologies/therapies without significant growing pains (Death, disfigurement, disease and disability). However I believe that the net gain is worth it in the long run. I have a big issue with this one. There are going to be (If there aren't already) parents who have had some kind of genetic counseling, who know that their child would be born with Downs/Sickle Cell/Pick-Your-Favorite-Disease (In vitro fertilization and embryo selection, amniocentesis, etc) and they will carry that pregnancy to term. There are going to be people who DELIBERATELY CHOOSE TO PRODUCE CHILDREN WITH DISEASE. Those children should not be born. Not when healthy babies can be born instead. Babies that will grow up with a healthy body, not limited more than their peers from the word go. Babies that will grow up without the deep social stigmas attached to illness. Reproductive 'rights' are going to be one of the biggest issues of the next few decades. I think it's going to happen. Someone is going to be willing to push the envelope and it will make them a billionaire or kill them. If you ask me I would rather NOT have sickle cell, and make sure my kids don't have sickle cell than be immune to malaria. But malaria is not a concern in my area of the world. I say get rid of sickle cell and continue to study the genetic code and effects in vitro/vivo so that you could reintroduce the 'good' parts of the mutation that protect against malaria while removing the parts that cause sickle cell. I've worried about this question for a long time, and I've decided it doesn't make sense to think a lot about it yet. Lets make sure that there are no more cases of Downs, Tay-Sachs, Hemophilia, Huntingtons, Hemachromatosis, or Harlequin-type Ichthyosis then worry about what is and is not a disease. I think we're going to work out the technical issues as we always have, with plenty of dead, disfigured and disabled people. I'd rather that sacrifice be 'for' something(Advancement of medicine), than just another shitty life course.It's also amenable to treatment in full adults though, so we can safely ignore it in embryos without giving up hope of treatment for future persons not yet born.
Do you edit all of these before you understand their effects?
What if some turn out to improve brain function in younger people (Or some other benefit, as with sickle cell)?
Then on the third hand, which changes do we decide are diseases?