Here is a blog comment on a wikipedia entry: http://philosophistry.com/archives/2009/05/plato_believed_in_eugenics.html According to this blog’s author: “Mates, in Plato’s Republic, would be chosen by a “marriage number” in which the quality of the individual would be quantitatively analyzed, and persons of high numbers would be allowed to procreate with other persons of high numbers. In theory, this would lead to predictable results and the improvement of the human race. However, Plato acknowledged the failure of the “marriage number” since “gold soul” persons could still produce “bronze soul” children.”
It is interesting to note how historical the idea of eugenics really is. While some may think of it as purely scientific, it is important to see how Plato advocated that social practices could bring his concept of eugenics into reality.
When we watch films like GATTACA, or read novels like Brave New World, we start to put a negative spin on genetic advancement. Certainly the idea of discrimination based on one’s genetic code is frightening, certain thoughts begin to cross the mind– What if I were born naturally? What if i was an “invalid” as they call it in GATTACA. The repercussions and effects that such engineering of designer children could have on this world are, to be frank, astronomical.
And what about the novel House of the Scorpion? The protagonist of this novel is a young clone of a rich overlord who has been genetically engineered to be an organ donor for when the old man’s organs start to fail. He is treated worse than an animal by most on the plantation, and the reader is guaranteed to despise all forms of cloning by the end of the book. But what if engineering organs genetically is what it took to save a life?
My best friend in middle school had Cystic Fibrosis. About once every few months she would miss a week of school to go to the hospital and have her lungs drained of fluid that had built up. One small mistake in her “Code of Life” or “Code of guaranteed death” as it may be, had cost her the ability to break down the mucous that accumulates naturally in the lungs. Her lungs were a ticking time bomb from day one.
Cystic Fibrosis usually kills in the early thirties of a victim’s life.
That gives Kate about 10-12 years left.
But she is in school. And last I heard it, she plans on going to graduate school, too. Kate is a hero in every way. She has long been the most well-adjusted person I know, despite the terrible knowledge of her slowly ticking short life. I asked her once, how she deals with knowing she will die young. She responded “Everyone dies, I just might die a little sooner. And you could die tomorrow in a car crash. We just don’t know, and we can’t prevent it so I may as well accept it.”
But what if we could prevent it.
Genetic disease can be eliminated, says science. We can already take a peek at the chromosome and point to a section. There is the piece responsible for Tay Sach’s, there is the piece linked to Cystic Fibrosis. We can now screen for these, and avoid the tragedy of having a child with such an untimely fate. But then again… if this were possible in 1991, Kate would have never been born, and I would never have had such a strong and beautiful best friend. What then?
The Tay Sachs section scared me. Should I get genetic testing before I have a child? What if you’re married and you discover both you and your partner are carriers for a genetic disease? Do you opt for adoption or do you risk having children? Do couples break up over this news? It’s sad and scary.
Tay Sachs disease is mindboggling. How can something so tiny as an incorrect letter, have such prodigious consequences? It’s a miracle we’re all walking around today.
Along the same line, Cystic Fibrosis is another devastating disease. A boy, a few years older than me, had cystic fibrosis in my high school. He was on the football team. The teachers and students loved him. He died when he was in his early twenties after a kidney transplant. I remember the whole school raised money so that he could have the surgery. It was a tragedy when he died and the whole community mourned the loss of such a beautiful soul.
Science is making great strides every day to unravel the mysteries which surround us. From the tiniest quarks to the most gargantuan stars, there are unfathomable connections that underlie all we see and know.
The hope of the many scientists that have worked so diligently on the human genome project is that their work will be used for good. Mapping the genetic code holds so much promise in developing cures for countless diseases. However, the pharmaceutical industry has become one of the most powerful industries in the country, and only functions to make a high profit margin. The pharmaceutical industry guarantees its profits through the use of patents, and when one begins to patent genetic code, the idealistic enthusiasm that has brought the human genome project so far falls by the wayside as bureacracy and financial discussions take center stage. This is the theme of part seven in PBS’s Cracking the Code of Life. How can there be idealism with so much money at stake?
Patenting DNA?
Patenting the genetic code raises essential ethical dilemmas. How can someone begin to prescribe patents for things such as eye color or height, and to what ends can this process be stopped. Greed and bureaucracy have unfortunately taken precedent over scientific idealism, and no one can possibly benefit from this selfishness as the documentary suggests. The pharmaceutical industry has functioned under this model for generations, and therefore will be very resistant, if not impossible, to change. While there will be many important scientific breakthroughs with the research done by the human genome project, those hoping for miracle cures to genetic diseases probably won’t live to see them. This process of patenting takes time and money, and the central decisions on how that time and money is spent will be left up to unqualified politicians and businessmen looking to advance their self interests, not idealists looking for a brighter and better future.
“One defective letter out of 3 billion and no way to fix it,” is the phrase used to describe Tay-Sachs disease in the 3rd episode of NOVA’s Cracking the Code of Life. I got pretty upset while watching this segment because the family’s story was just so sad. My flow of thought went something like this, “That poor baby, those poor parents, what a terrible disease, of course we should fix this mutation if we could.” I think everyone can agree that the ability to remedy Tay-Sachs would save many families a lifetime of heartache. However, as I began to read Brave New World, my feelings got a little complicated. If scientists have the ability to correct a genetic mutation to cure a fatal disease, what else can they do? Will we live in a Gattaca themed world where parents pick and choose the abilities and looks of their infants? Parents hope for a healthy baby. However, what will they begin to hope for in a world where you can manually “fix” an unhealthy baby? Baby blue eyes? A small nose? The possibilities are endless. Parents would begin designing their children like one would design the perfect car. If technology allowed us to have a perfect kid, of course we would jump at it. The thought is pretty scary. As Gattaca shows, that kind of world is not necessarily the perfect place to live.
Even though the vision of a genetically engineered future is scary, Tay-Sachs disease is scarier. To have a child, take care of it and love it for four years, and then he or she is gone is a nightmare. But some people live this nightmare. The chance to give a child the hope of life and to give parents the joy of watching their child grow up is something that many scientists are working tirelessly for day in and day out. I think that a child deserves the chance to live a life free of genetic diseases, even if that child is handpicked by his or her parents in the process.
I suppose I should start off by saying that I am no expert in literary analysis. I am a Neuroscience major and pre-med. Your typical House M.D. wanna-be. So you will have to excuse me if my blog posts this semester are more on the scientific side. One thing that I do have some knowledge of is genetics and hereditary diseases. It wouldn’t be inaccurate to call it a rudimentary one, but some knowledge all the same.
One of the sections in the NOVA special interested me more than others. Part 12- Finding Disease Genes- discusses the advances being made into finding particular genes, which when mutated, increase your chance for a certain disease. It reminded me of in class when we discussed this misinterpretation of the phrase “gene for…” something. It seems that this could be misleading. At a most basic description it functions like this: DNA(genes)->transcription->mRNA->translation->amino acid (AA1 +AA2…+AAn=protein). So what they mean is that for these hereditary diseases some people inherit a variation of a gene and that variation is pathogenic. A good example for this is Huntington’s Chorea. It is a horrible neurodegenerative disease that is rare within our population. There is a gene on the tip of chromosome 4 that does CODE FOR a protein called Huntingtin who’s function is not clearly understood . Mutations in this gene cause the amino acid sequence to be incorrect and this causes the protein to function improperly. Obviously this is a tragic condition. It is also a very well documented genetic one. In fact, the offspring of an afflicted patient have a 50% chance of getting it. The problem with the disease is that it usually doesn’t manifest until mid-life. So many people have children by the time its discovered, and now their children have a 50% chance of having the mutation. The point that I want to raise here is one raised by this documentary and by many popular movies such as Gattaca. Would you get tested for this genetic mutation if you knew that you have a 50% chance of inheriting the disease? What would a positive result do to your quality of life? I think that these questions are a matter of opinion and personality. Personally I would want to get tested for things like this before I decide to have children. In my opinion playing dice with your child’s future quality of life is very irresponsible. Yes, you might get some 20-30 good years with them, but I wouldn’t want to burden my child with having to make the same decision I would, having to find out at 30 years old that their brain will literally begin shrinking in a few years.
I should say that my opinion is only this strong on diseases that are especially devastating and have a high percentage of hereditability. Things such as alcoholism or obesity can be avoided, sometimes not easily, but they can be. Also, could this future, full of genetic omniscience, be one of discrimination? This obviously was a point raised in Gattaca, but it can be derived from the NOVA special. Would someone refuse to hire a Professor because they knew from his or her records that he or she will get Huntington’s? On average symptoms begin age 35-44, but it can occur later than that. I’m not sure that I have the best perspective on this issue. The only thing I’m at risk for is high blood pressure. It seems though, that we can guarantee that as we gain more knowledge everyone will face this one way or another.
Though musical artist Robert Palmer (singer of the title of this post) may be focusing on the lusty part of love, I’d like to focus on the over-reliance and/or over-belief aspect that is attached to our culture’s love…of doctors. In essence, I feel that we rely way too much upon the “professional opinions” of our doctors. Allow me to tell a personal anecdote to explain.
My grandmother was diagnosed with breast cancer when she was in her forties. She volunteered to have a mastectomy to reduce the risk of the cancer reappearing in her body once again, and the doctors said the odds of that happening were very slim. They were wrong.
Thirty years later my grandmother’s cancer returned with a vengeance, spreading throughout her whole body and threatening her life. The doctors were more conservative this time around, as they projected her to live only for a short while longer, even with chemotherapy and other treatments. Once again, they were wrong.
My grandmother thrice outlived the doctors’ life expectancy estimations, proving that her body was stronger than their medicines. However, as with almost all cancer patients as of yet, the cancerous genetic mutation did ultimately conquer.
In Gattaca, our protagonist Vincent Freeman says, “They’ve got you looking so hard for flaws that, after a while, that’s all you begin to see.” In our hospital society today, many doctors refer to their patients by numbers or by their ailments. Granted, I realize the pressures placed upon and the responsibilities of doctors, something that I would never want to undertake, but the humanity of healing humans is becoming lost in the science. And yet, we still uphold our doctors as demigods, relying on them to make everything better, that is, until the malpractice suits become profitable ventures (but that’s more of a societal ill than a medical one).
To relate this to our course of study, after watching Chapter 3, “One Wrong Letter,” and Chapter 14, “A Family Disease,” of the PBS “Cracking the Code of Life” NOVA Special, I wonder if I should be worried about my own younger sister having a predisposition to developing a case of breast cancer, knowing that it is a “hereditary disease” (courtesy of the BRCA 1 and 2 genes). I also feel compelled to wonder (possibly worry) about the probability of being a carrier of that gene for my children.
But even if I were to subject myself to an “almighty genetic test,” why should I be so confident in what the doctor would have to tell me about the results (false-positives, anyone)? Why should we trust their expertise so much? Should we forget that they, too, are human and apt to making errors, misjudgments, and biased opinions, just like every other human? We must keep in mind that the two magical letters of “M.D.” behind a man or woman’s name go both to the person who finished in the top of the class as well as to the person who finished in the bottom of the class, just as long as they passed the final exams, even if only barely.
But would the grand prosperity of the great Human Genome Project “cure” this doctors’ disease? Would genetic testing remove any wiggle room for doctors to interpret our DNA maps, thereby removing any analysis errors, misjudgments, or biases? Or will some doctors be like some drivers who don’t know how to read the roadmaps sitting on their laps?
Professor Clayton briefly mentioned the subject of Epigenetics in class this week. He said it was a whole other subject and did not want to get too deep into it. However, after learning a bit about it this week, I decided that I would do the favor for him.
Much of my knowledge on epigenetics comes from a NOVA series which we are all familiar with. Here is the link to the video:
The basic concept behind epigenetics is that certain drugs can cause genes to express themselves stronger or weaker than they normally would. It is in essence a way to change individual genomes and change traits in future generations. It is a brand new science that will most likely lead to more changes than the discovery of the actual human genome will. Scientists expect many breakthroughs in the field and are currently mapping out the epigenome. More interesting to me is the humanistic side of epigenetics.
Epigenetics is the hopeful companion to the study of genetics. In a way it is more humanist as well. People use the phrase “bad genes” as the excuse for many of life’s shortcomings. It is very easy to blame bad genes for things like obesity or poor health, and while it may seem convenient, what epigenetics reveals is that it is really a cop out. The article in Time Magazine which I have posted below talks about how studies have shown that cboices made during the span of one’s life can directly affect gene expressions and character traits of offspring just a generation or two away. Excersise, healthy eating, not smoking, and many other things can go a long way towards increasing the chances for favorable gene expression it says.
To me this concept represents a hopeful thought for mankind. Darwin said that evolution and change come about after years and years of natural selection and after many generations of people have come and gone. This leaves mankinds prospects for change and evolution in a lifetime fairly grim. Certainly it would mean that if you are born into the world with an undesireable trait, say a disease or a tendency for obesity, then in all likelihood your offspring will be brought into the world with the same short coming. To me that would be discouraging. Through the use of drugs, scientists have found that they can cause genes to express themselves stronger or weaker than normal. To me this is exciting and provides more incentive to live a healthy lifestyle. Everyone wants to give their children favorable characteristics and the world of epigenetics provides hope that choices in this life can prevent our children from having to suffer from some of the hardships we may have endured due to our genes.
Epigenetics provides hope. Hope that we can make the world better for our offspring through healthy choices now. Bringing change is a good thing and not having to wait for years and years of evolution is good. Epigenetics will open up a whole new realm in the study of genetics that could pave the way to many of the science fiction scenes we see in films like Gattaca. It’s amazing when new discoveries such as epigenetics are made and it makes you wonder what else could be out there waiting to be discovered.
Nova Special 7: Who owns the genome This section introduces a troubling trend in the patent office. Namely, the fact that human genes are patentable. Now, Anyone who hears this would initially be incredulous. After all, these are naturally occurring chemical compounds which we all make and make use of. However, the U.S. Patent Office guy they talk to makes a decent case. He notes that the gene for insulin has been patented and, because of this, insulin is synthetically made to the benefit of diabetics everywhere. However, Eric Lander notes that some genes have been patented but not put to any discernible use. Indeed, their patent, or even potential patent, dissuades others from looking into their use for fear of the owner’s conditions.
Celera’s use of publicly available Genome Project information for their own corporate ends is similarly troubling. After all, Celera could research literally one gene themselves and, assuming that the Genome Project’s data is released as soon as it is gathered, make use of publicly available data and stay “one step ahead”, in some sense, and “finish first”. Clearly this is an extreme example, but that idea seems unfair, as does the fact that the relationship does not go both ways: the public project could not access Celera’s data.
In both these situations, we see a conflict between pure science and monied interests. This is nothing new. After all, research universities exist so there is money for scientist’s to fund their research, and it can always be difficult to practically justify pure science. However, as the gap narrows between “pure” science and practical medicine, those sciences will be seen as increasingly valuable. Although corporate money is in no way a bad thing (after all, DuPont’s labs have churned out a significant number of nifty new compounds), it expects a product, and it is getting involved quite early in the process (discovering and isolating the information which does something which could be used or altered to create a change). In a sense, it’s also unsettling to have for-profit organizations involved in the nuts and bolts of our existence. We are seeing a growing concern with corporate involvement in, and control of, all aspects of society in the current healthcare debate, and this could be seen as an extension of this debate (the goal is, after all, to create new drugs and cure disease).
Furthermore, if we advance genetic medicine to the point where we can, to some degree, “edit” our children, then capitalism again comes into play. It would not be unreasonable to believe that this service would have some cost and that some facilities and organizations may be better than others. Carrying this line of thought further, it is conceivable that the wealthy would be able to buy (in some sense) children which are objectively genetically superior to those of the poor. This could create a genetic caste system (like that in Brave New World, but not government-run). Of course, capitalism and the entrepreneurial spirit are characteristic of the “American” way of doing things, but so is the belief that birth does not determine ability, and genetic determinism is absolutely abhorrent. Clearly, all this is way down the line, and my assertions are not directly connected. However, the greater the spread of commercialization of science (effectively its removal from the academic sphere), the greater the potential harm. Today, patenting genes, tomorrow, saving up to buy the gene therapy to put your kid ahead.
Regardless of the pessimistic predictions, the scientific pursuit of understanding the human genetic code is both fascinating and valuable. It reflects the human desire to know, and an insatiable curiosity to understand our world. Our cultural narrative is in part defined by the scientific research we pursue, and the race to discover the essence of the very stuff that makes us human reflects our craving for knowledge. Much like art, scientific discovery adds a richness to our culture it would otherwise lack. We have been presented with the opportunity to understand the human genome, and we ought to take it. A society that shuns discovery because, at times, it is scary, has stomped on the very curiosity that defines us as humans. Of the many frightening aspects of Brave New World, the lack of genuine scientific pursuit reflected a cultural emptiness as distressing as the loss of religion or literature. Conversely, for all the talk of gene patenting and “designer babies” in Nova’s documentary, watching discovery inspired me.
The idea of doing something just to prove we can has always appealed to me. Of course, we aren’t trying to crack the genetic code *just* because we can, but gene research is far more than an opportunity to cure disease. It is also a tremendous challenge for our society. We shouldn’t celebrate the completion of the human genome project strictly in terms of its scientific utility, but also because it is an incredible testament to human knowledge. I’m reminded of JFK’s speech about going to the moon. He said,
“There is no strife, no prejudice, no national conflict in outer space as yet. Its hazards are hostile to us all. Its conquest deserves the best of all mankind, and its opportunity for peaceful cooperation many never come again. But why, some say, the moon? Why choose this as our goal? And they may well ask why climb the highest mountain? Why, 35 years ago, fly the Atlantic? Why does Rice play Texas? We choose to go to the moon. We choose to go to the moon in this decade and do the other things, not because they are easy, but because they are hard, because that goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we are willing to accept, one we are unwilling to postpone…..”
Why study the genes? Why climb Mount Everest? Why go the Moon? One reason, of course, is the utility of it; perhaps we will cure disease and perfect the human race. But the more exciting answer, the better answer, is that we do it because it is a cultural challenge. Because to be human is to ask and search for the answer. We study the genome because we want to know, and because that race for discovery is valuable in and of itself.
I don’t know whether our relentless curiosity will push us into a dystopia. But I do know that had we never embarked on this quest, our culture would be much poorer for it.
