I just got back from my first scientific conference in San Francisco with the American Society of Nephrology. I presented my last year's worth of research on a poster and stood there while much smarter people quizzed me about it. I thought there would be a post about this whole experience but nothing really grabbed me there. The most impressive thing to me was the amount of free junk being offered to all of the medical doctors by the big pharma and health care technology companies. Doctors love free crap.
Instead, I'm posting this essay I wrote tonight with my little sister, Anna, about the ethics of genetic engineering:
Shades of Gray
The rise of biotechnology brings us into a new age of ethical debate. In every technological upheaval from the Industrial Revolution to the rise of Silicon Valley, debates arose over new ethical dilemmas brought about by these technologies such as workers rights, privacy concerns and copyright law. In the coming Biotech Revolution, these ethical debates will get much thornier and the shades of gray will flummox us like never before.
Public opinion over the genetic engineering of embryos would probably fall into three main categories: outrage over any genetic tinkering, those willing to change genes to remove disease and finally to people who embrace all possible enhancements. In my opinion, most people would probably fall into the middle category and would agree to use genetic engineering to remove diseases from embryos. Unfortunately, that brings the undesirable job of choosing to define what constitutes a disease.
Obvious genetic diseases include Huntington’s disease, Downs syndrome, cystic fibrosis and predispositions to cancer or diabetes. However, some conditions ignite controversy over their designation. Sandals, in The Case Against Perfection, brings up a hypothetical case of two women who want to engineer their child to share their deafness. Does being deaf constitute a disease that needs a cure? Obesity carries many unhealthy side effects and can be a major impediment to advancement in our society. Can that be considered a disease that needs rectified? Being ugly as a warthog closes many doors and makes life harder in almost every way. If legislation approves genetic engineering for disease reduction only, a good case could be made for the inclusion of gross physical appearance on that list. Where can the line be drawn for a disease that needs a genetic cure?
The issue gets even cloudier in the realm of the brain. Currently, research has a very incomplete picture of the genetic basis of psychological disorders and abnormal neuronal development. However, there will be a corollary to Moore’s Law in biotechnology and this research will make vast bounds as gene sequencing and protein imaging technology (Freeman Dyson claims these are the two most important breakthroughs we need) prices drop dramatically. If scientists discover a number of genes that lead to bipolar disorder or autism, do we have the right to remove those genes from an unborn child to be replaced with “normal” versions? I’m sure many parents would demand to do just that but we might also be throwing away the traits necessary to make another Van Gogh or Einstein. If genes are found for antisocial or criminal behavior, parents might be tempted to make the teenage years easier but we could also breed ourselves into sheep. Then where would we be when the aliens invaded? A “gay” gene was recently discovered in fruit flies. If this gene was deleted, the male fruit fly would completely ignore female flies and would only do the mating dance for male flies. A religious fundamentalist might argue that they have the right to remove this “sinful behavior” from their children but can we allow a parent to make that decision? Genetically engineering behavior possesses such frightening overtones but many people will insist on this for their children. How far can we let them go?
Even the straightforward position of using genetic engineering to only fight disease leads to many troublesome questions in defining disease. I don’t want to even get into the crazy possibilities and scary Brave New World aspects of unlimited genetic engineering and enhancement. The debate on these issues will be fierce. I’m excited to see where society draws the line in the shades of gray.
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