Okay, I noticed that this was a hot topic in class, and I think it deserves a bit more discussion. I think that there is a fine line between eliminating brutal, lifelong, inherited disease, and making people just "better" people via genetic engineering. To be honest, I have to agree with Richard. I don't know if it's immoral not to help, but I think that if people could end this disease, it should be ended (with parent's concent?). My problems come in with people who are mentally handicapped. Who says that children or adults with Down syndrome are less happy than me, and therefore "Suffering"? I think most of my fear takes the form of the Gattaca society, where there is genetic discrimination. I also would hate to think that society would start designing their children, choosing their features like sweaters out of a catalogue. That's just too sick to contemplate, but I really wouldn't put it past humanity, I'm afraid. As you can see, I am clearly confused. Andrea

-- Anonymous, November 15, 2000

Answers

I've thought about it further, in fact while I was in my developmental psychopathology class. And while I still have a lot of problems with the idea, I'm not sure it would be bad in all cases. It came up that most mental retardation is primarily genetic or organic in nature, and in the case of the profound or sever subgroups (IQ's below 35-40) is esentially untreatable by conventional methods. Drugs seem to have little or no effects either. The really sad thing is that these people will pick up virtually no life skills. By definition they will need help with basic things like feeding dressing and toileting for the rest of thier lives. This is not due to any physical defects either, it is simply an inability to learn tasks even this basic. These groups often have a mental age at or below 2 years. Working with moderate to mild groups they find that the deficit is often in Theory of Mind (ToM). They essentially can't procese emotional or situational cues in a lot of cases. It appears that the deficit may be that they can't learn. At all. Maybe there is something going on up there that we just don't know about, but in a lot of cases it truly seems (I'm talking profound now) like there geniinly isn't anything going on. All of this is getting to a point, the protein metabolism is so disordered that the brain structure never forms properly. Is there really a mind in there? What about a soul? Some would argue that this soul means we should leave them be, but I would say, if there is a soul in there, do we really have the right to leave it be? THe problem of who draws the line still comes up, but really there are a lot of things like Huntington's for example, that might just benifit from gene therapy. And no, this doesn't mean I believe in desiner babies...

Now I'm even more confused

Isis

-- Anonymous, November 16, 2000

May I suggest a book called simply "Adam" by Henri Noeuwen. May I also suggest a visit to L'Arche, a group in town that serves the severely handicapped. Perhaps because we think so very individualistically, perhaps because we think so much in IR terms, perhaps because we define pretty much everything in IR terms, some aspects of life make no sense to us. Adam spoke to Henri, taught him, had a purpose in life so far beyond anything I will ever accomplish that he humbles me. We are *so* alone, so separate, and so very, very arrogant.

-- Anonymous, November 17, 2000

I took this discussion into my GNST 500 class and has as rip-roaring a conversation with them as we did in Ron's class. This morning a student sent me the following note:

I read in the Costa Rican newspaper that the first genetically engineered baby was born on Monday in France. His name is Valentin and his genes were manipulated to prevent some terrible disease. The parents are elated and relieved that their child will live a normal life.

Looks like the discussion is moot. GenEn is here. If I had absolute faith in science, this would be great news, but I don't. Science never works in a vacuum and power structures are always paying attention. The atom bomb and biological warfare didn't just pop up in the hands of governments. I celebrate the fact that this little boy will not suffer the particular disease he was likely to, but I simply do not believe that the end result of this is going to be as positive as we may think it will be. I agree with Andrea....I hate to think of designer children but it will happen. Once upon a time safe and accessible abortion was celebrated as a woman's freedom to choose--lovely right, again based on Locke and various philosophies of freedom. But in many cultures this "freedom" has become "freedom to choose baby's gender" and female babies are being aborted at an alarming rate. Sociological concern is that an overabundance of males in places like China and India is very likely to increase the possibility of war. Who knows what the consequences of GenEn are going to be? Some positive; some negative. Will we live long enough to see the negative operationalized??? At this pace, maybe. ...Margo

-- Anonymous, November 18, 2000

This issue is a bit of a senstive one to me since my mother has suffered from a pretty serious illness for most of her life. Following the idea that parents should try to put an end to their defective genes I wouldn't be here today. So far so good, I haven't inherited any serious medical problems. Maybe I do carry those defective genes and they'll pop up in my children but who's to say for sure. And what if my child happens to be the one that comes up with the cure for one of these medical problems or contibutes something equally important to the world? Isn't that possibility worth the risk of passing down defective genes? I think so. Also, nature has a way of taking care of itself. No matter how much genetic engineering we do there are still going to be problems or illnesses that pop up on their own. I think the question we should be addressing isn't one regarding how we can manipulate our genes to make us "better" or "stronger" or "healthier" but rather how we can change the things that are making us sick, like our environment. Where did cancer some from? Sure, some of us are genetically more likely to get cancer, but I truly believe that it takes something in our environment to trigger most cases. Incidents of genetically linked illnesses are rising, but why? Is is because there are more faulty genes being passed down than before or is because we have so many pollutants invading our bodies? I really don't think that genetic engineering is the answer to our problems. I'm all for medical research and trying to cure diseases but I think we need to take a look at the big picture and approach it from a holistic view.

-- Anonymous, November 20, 2000

As for genetic disorders increasing, there are two factors that I would mention. One is that once the phenotype hits a certain density in the population the occurences tend to increase exponentially, or something like that, it's a math thing, but I can't remember exactly. The other thing is actually medical advances, for one thing better pre and post natal care mean that babies that would not have been viable even 50 years ago are now being saved, and the other being interventions such as insulin, 100 years ago a diabetic (junvinile type) would never have survived long enough to pass on that gene. I don't know if I mentioned this before, but in bio I think they call it genetic vs. moral twilight. That is, do we keep saving anyone we can, and allowing them to bread even though it means an increase in the number of "bad" genes in general, or do we let our morals slip and let them die, or remove some esential parts? My personel view, we'll never cure everything, at least not until we start colonizing other planets. I think this one is more then capable of taking care of it self. That is, nature is a balance, right now we are fighting that balance, and the planet will keep evolving new things for us to die of until we get our damn population under control. It may sound cold, but really all nature is trying to do is save us, if we keep running down this road we'll make our planet unihabitable. WHy else would so many death factors be density dependent.

Isis

-- Anonymous, November 20, 2000