Christophe Larroque
History
215B:
“Artificial
Life, From The Golem To Human Cloning”
Professor
Michael John Gorman
November
13th, 2001
Eugenics And The Human
Genome Project
A First Step Towards
Creating Made-to-Order Human Beings
The Human Genome Project was the first endeavor undertaken by an international consortium to discover what the genetic information in every human being meant, where it was and how it could be used. At the time of the inception of the Human Genome Project, the benefits of understanding the genome and being able to manipulate genes were at best speculative; some declared this project a modern-day eugenic enterprise. One of the fears expressed was that unlocking the secrets of the Human Genome might actually enable people to decide what traits they want their children to have, which would be quite opposite to the current method of random genetic exchange of parents’ traits. Yet in order to understand how we might be able to juggle with our progeny’s traits, we need to discover what makes us human and individuals in the first place. This was the purported goal of the Human Genome Project: to decipher our genetic code and understand what traits are commanded by which sequences of DNA, as well as their chromosomal location. By looking at eugenics historically and examining the past mistakes made by scientists in the name of progress, we can gain a good perspective when dealing with the idea of creating life with an artificial twist: that of tailoring our babies’ traits to our tastes.
The biological pursuit for identity found its genesis in Gregor Mendel’s discovery of the laws of inheritance. Although his work was performed on plant life, scientists soon discovered that genetics were applicable in human procreation as well. “By 1907 it had been shown convincingly that Mendelism could account for the transmission of eye color as well as of the inborn error of metabolism called alkaptonuria.” (Kelves, 3) All of the sudden a new field emerged in scientific endeavor, that of eugenics. If one could breed certain traits in smaller organisms such as peas and fruit flies, what is keeping us from doing so in humans? Francis Galton, the forefather of eugenics, originally intended to improve human condition by breeding out what he saw as undesirable traits. Eugenics became a science whereupon knowledge of human genetics was applied to social problems. Eugenecists not only studied medical disorders such as epilepsy and diabetes, but also theorized that negative social traits such as prostitution, alcoholism, feeblemindedness and poverty were genetically transmissible. Eugenics developed into a subjective, speculative and hubristic study of social discrepancies. Generalizations regarding race, religion, social class and economic status were made by eugenecists around the world, as they neglected polygenic complexities in favor of single-gene explanations (Kelves, 8). In eugenecists’ minds, the “discoveries” they made could be applied to create a biologically sound public health policy. To breed out the negative traits meant a better social environment. There were two courses of action: “positive” eugenics, whereupon human heredity and/or breeding was manipulated to create a medically and socially superior being; the other option was “negative” eugenics, in which the quality of the human race was improved by eliminating people with traits that made them biologically inferior. Unfortunately, relatively little was done in the realm of positive eugenics, while negative eugenics in some countries led to horrific crimes committed in one of humanity’s darkest hours. In the United States, several states passed eugenic sterilization laws, which were declared constitutional in 1927 in Buck vs. Bell, notable for Justice Oliver Wendell’s declaration that three generations of imbeciles were enough. (Kelves, 10) On a more radical side, Nazi Germany massacred many in what was an ethnic cleansing based on eugenic claims of Aryan superiority.
Eugenics developed in the early part of the twentieth century had not led to the discovery of human makeup but to an act exemplifying humanity’s sometimes dark nature. In the years following the Second World War, society and the global scientific community turned away from eugenics and human genetics. “The only thing you can do with human genetics is develop prejudices. And anyone who went into human genetics was immediately classified as a person of prejudice.” (Kelves, 11) Yet several scientists believed that human genetics could be useful if searched for well-defined , sharply segregating traits which would be unaffected by environmental influence and could be clearly defined. The discovery of human blood groups’ Mendelian patterns of inheritance led to the conclusion that there were would be genetic markers located at the same chromosomal place in most individuals. Following that theory, other genes could be located relative to those already discovered. The end product of such a search would be the mapping of the all the human genes on their respective chromosomes. Theoretically this would in fact define what human beings are, but for the time it was factually impossible to accomplish. The technology was not up to par. There was no way one could map the genes on a single chromosome in a human lifetime, let alone on all 24 of them.
As technology and molecular biology progressed, the mapping of the human genome became less of an impossible to more of a daunting task. In 1953 Watson and Crick discovered that genes were in fact DNA, and within a decade scientists had discovered the alphabet in which genes were written. With this knowledge came an increase in rate of general biochemical and genetic discovery. Down’s syndrome was traced to having three copies of chromosome 21 instead of the regular two. A flood of new discoveries soon followed. In 1968 came the mapping of the first non-sex-linked gene; in 1970 H. Gobind Khorana and a group of twenty five post-doctoral students completed the first genesis of a gene; the first successful genetic modification followed in 1973. With these breakthroughs came a renewed interest in the human genome. Molecular biology was believed to open a new human prospect: “For the first time in all time, a living creature understands its origins and can undertake to design its future.” (Kelves, 18) But because of the horrors committed in the name of eugenics, the understanding of the genetic makeup of human beings was viewed as a means to improve understanding, diagnosis and treatment of disease, not of improvement of social discrepancies in groups of individuals. The basis for the future Human Genome Project would therefore theoretically not be in the name of traditional eugenics.
The Human Genome Project itself came into being thanks to the efforts of R. Sinsheimer and C. DeLisi. Having held workshops on the technical prospects of a human genome project in Los Alamos and Santa Cruz, both scientists finally gained enough support for the Department Of Energy in 1986 to back a five year plan for a human genome program, and an allocation of $4.5 million in the 1987 fiscal year. After a couple of years the National Institute of Health took over the DOE’s program, hiring Watson to head the Office for Human Genome Research. This project was met with some controversy. Critics claimed that the work would be tedious, routinized and intellectually unrewarding since only 5 percent of the base pairs of human DNA is believed to code for genes. The rest is “junk DNA”. Coding the genome would therefore not yield much usable information. And the amount of man-hours and cost of mapping the genome was at the time quite great. The three billion base pairs that compose DNA are supposedly enough to code between 100,000 to 300,000 genes. (Gilbert, 83) But the critic’s assertions were met with fervor. The technology involved in the project was evolving quite rapidly, and the human genome was garnering international interest. The belief was that the medical payoffs and technological advances which accompanied the automated sequencing would lead to a global superpower in the area of molecular biology. “The industrial spokesmen contended that it would be essential to national prowess in world biotechnology, especially if the United States expected to remain competitive with the Japanese.” (Kelves, 27) Scientists from foreign countries were enthusiastic was well as apathetic on the merits of the Human Genome Project. In 1988 the international program HUGO became a sort of “UN for the human genome”. Different sections of base pairs were assigned to countries for them to sequence; certain countries like Italy were content to simply research their assigned portion of the X chromosome, while certain English scientists declared “We do not intend to be assigned a part of a chromosome by some Politburo somewhere. That’s no way to do genetics.” The public was offered several views of the Human Genome Project as well. “The French newspaper Le Figaro reported that scientists compared sequencing the genes to listing the millions of letters in an encyclopedia without having the power to interpret them, ignoring practically all vocabulary and syntax.” (Kelves, 29) Yet interest did not wane. Once the ball got rolling, there were four institutions in the United States supporting genome programs: the NIH, DOE, USDA, the National Science Foundation and Howard Hughes Medical Institute (The USDA is working on plant genomes, mapping genes that factor in resistance to insects, tolerance of drought, yield and flavor). Japan is working on automating the sequencing process, a database in CEPH in Paris contains genetic-linkage information on a large number of multi-generation families. (accessexcellence)
With all of these wheels set in motion at the end of the 80’s and the exponential increase in technology, at the dawn of the twenty first century the Human Genome Project has been completed. The new question is not “Can we do this?” but rather “What now?” There are tremendous social implications that follow certain courses of action. Before the Human Genome Project began a clear disclaimer was set forth. There would be constant monitoring of the project, a type of ethical surveillance to ensure that the errors committed in eugenics weren’t reproduced. Not only were precautions regarding misinterpretation of the genome instilled, but the legal issues regarding genetic information were hardly deemed innocuous themselves. The issues all depended on what we can/will do with the knowledge we have gained by mapping the genes in the human system. Several options, theories and ideas have arisen. Foremost in scientific thought is the possibility of discovering which genes are linked to certain hereditary diseases. The medical science and profession will be greatly enhanced with such knowledge.
The possession of a genetic map of the DNA sequence of a human being will transform medicine. One immediate change will be a knowledge of genes that cause rare genetic disease. More important, however, will be the identification of genes for common diseases. When we have a detailed genetic map, we will be able to identify whole sets of genes that influence general aspects of how the body grows or how the body fails to function. We will find sets of genes for such conditions as heart disease, susceptibility to cancer, or high blood pressure. Along with many other common afflictions, these will turn out to have multiple genetic origins in populations, as will such mental conditions as schizophrenia, manic-depressive illness, and susceptibility to Alzheimer’s disease. A whole variety of human susceptibilities will be recognized as having genetic origins. (Gilbert, 94)
The founders of the project believed that with luck once the entire genome will be mapped, the genes which cause those identifiable diseases will be distinguished on their chromosomes. But once those genes are discovered, what is one to do with the information? The natural progression of thought led to the idea of changing those “defective” genes. The issue now became whether or not it is permissible to do so. Do we as human beings have the right to use the knowledge gained by the Human Genome Project to try to improve life? James Watson, the foremost scientist in the HGP declared that we needed to do so “for the genetic dice will continue to afflict cruel fates on all too many individuals and their families who do not deserve this damnation. Decency demands someone must rescue them from genetic hell. If we don’t play God, who will?” Quite a hubristic comment was sure to conjure images of mad scientists trying to create Ubermen. But among some of the precautions taken were the establishment of associations that would monitor the Human Genome Project, educate the public, and ensure no ethical oversights were made. Part of the DOE’ s funding for the HGP included a budget for the Ethical Legal Social Implications group, that would keep tabs on the moral direction of the HGP. ELSI believes that there is more potential misuse of genetic information in the area of personal privacy, rather than a second wave of eugenics. Although ELSI sees the HGP as a gateway to more accurate diagnoses, preventive intervention, intensified screening, lifestyle changes, and early and effective treatment, the flip side of the coin is not quite as bright. With knowledge of personal genetic makeup can come anxiety, unwelcome changes in personal relationships, the danger of stigmatization. Some predictions about certain diseases are bound to be incomplete and can needlessly frighten a person into making rash decisions. Carelessly handled genetic information could threaten us with discrimination by potential employers and insurance companies. If for example my genes say that I have a thirty two percent chance of getting skin cancer, would my insurance agency make me pay higher premiums than someone with a twenty five percent chance? Would employers be ready to hire me if they knew that my genetic makeup pointed to mental depression? These are the legal issues regarding healthcare and the success of the HGP.
With the knowledge gained by the mapping of genes and subsequent identifying of disease-causing genes, attempts to improve life will be centered around the individual rather than the human gene pool. “The emphasis now is not so much on the ‘cultural perfection of man’ or even on improving the quality of our genetic pool, but rather on the use of genetics—through diagnosis, treatment, and prevention—to guarantee all human beings an individual and natural right, the right of health.” (Keller, 295) The policy is now not one of improving humanity by breeding out undesirable traits, but of preventing personal discomfort. Preventing personal discomfort means attempting to rid an individual of genes that might lead to disease of some kind, be it cystic fibrosis or ovarian cancer or hemophilia or schizophrenia. The only way to do rid a person of any of the genes causing diseases would be to alter their genetic makeup, excluding or replacing the concerned genes. The topics of prevention, parental planning and germ-line engineering are now in the spotlight, and new ethical issues are raised as well. Prevention and parental planning are practically mirror images of one another; “treatment” in the form of germ-line engineering is at best a long-term goal, so “prevention” means preventing the births of individuals diagnosed as aberrant to the norm—in short, abortion. Parental planning becomes the focus of prevention, as couples would have genetic testing done to see the statistical chances of their offspring being susceptible to whichever disease is at hand. Decisions made about whether or not to have a “genetically inferior” children result in a change in our national health costs, involuntary as it may be. No children with traits conducive to disease, no sick people in hospitals in half a lifetime. (Keller, 296) As recently as the year 2000 advertisements appeared in newspapers of high-profile Universities offering to buy eggs from women attending that school. The advertisements emphasized that the donor should be athletic and Caucasian. At Stanford University the outcry against this advertisement was loud and heard by many. Letters were sent to the editor, discussion groups formed in both academic and social setting, allowing for much deliberation over the issue.
Genetics has sparked debate since its discovery by Mendel. The application of heredity to humankind brought about such questions as “Who are we, what are we?” in the biological plane. Attempts to alleviate human degeneration through eugenics proved to be a very dangerous idea if put in the wrong hands; the Human Genome Project engendered ethical, legal and social debate in an area of study which hadn’t even been finished. Past errors have alerted us to the hubristic side of the HGP, and we are making sure plans are in place that will not allow another Holocaust. The best way to assure that those mistakes won’t occur again is by maintaining an open forum on the matters engendered by the HGP’s discoveries, by keeping people aware of the pathways that are generated. The onus is on us as a human race to decide whether or not we can allow ourselves to become like God, and whatever the decision we make, it must come from reflection and input from as many as possible. Life, artificial or original, is not a toy.
Works Cited
http://www.nhgri.nih.gov:80/Policy_and_public_affairs/Communications/Fact_sheets/elsi.html.
http://www.ornl.gov/hgmis/publicat/tko/08_ethical.html
http://www.stanford.edu/group/morrinst/hgdp/MCK2NRC.html
http://www.accessexcellence.org/AB/IE
http://www.ess.ucla.edu/huge/policy.html
“Oregon law gives adoptees right to find birth parents.” The Stanford Daily 31 May, 2000: A3.
The Code of Codes: Scientific and Social Issues in the
Human Genome Project