Social and Ethical Issues in the Human Genome Project
Kevles, Daniel J., National Forum
In the late 1980s, the United States government inaugurated the Human Genome Project, an unprecedented effort in biology that will transform our capacities to predict what we may become and may enable us to improve or to prevent our genetic fates, medically or otherwise. The project's immediate purpose is to obtain all the particulars about the human genome--that is, the complete details of the encyclopedia of genetic information that is housed in every human cell. In these details lie the keys to what makes us human instead of, say, chimpanzees, to what defines our physical and mental possibilities and limits as a species.
The human genome has been estimated to contain between 50,000 and 100,000 genes, which are spread through twenty-four different chromosomes--the two sex chromosomes, X and Y, and the twenty-two others. The genes themselves are material entities, double-helical strands of deoxyribonucleic acid (DNA). The two strands of the helix are joined at regular intervals by a union of one of two pairs of chemicals--adenine with thymine or cytosine with guanine. Called "base pairs," these rungs across the double helix can occur in any sequential order. The order in which they do occur defines the genetic code, the hereditary information that the helix contains.
The genome project has two fundamental aims. The first is to construct a map of the human genome, which means to determine on which chromosome each human gene resides and to specify where on the chromosome it is located. The second is to obtain the sequence--that is, the order of occurrence--of all the base pairs in human DNA. The number of all the base pairs has been estimated at around 3 billion.
The mapping and sequencing of the human genome will not be completed until at least a decade from now, probably longer, but the knowledge that is acquired as they proceed will undoubtedly revolutionize understanding of human development, including the development of characteristics both normal and abnormal (such as disease). However, expectations of such a revolution have been accompanied by apprehensions of misuse, especially the type of misuse of biology that occurred early in the century with eugenics.
The basic idea of eugenics was to improve human stock by increasing the number of allegedly desirable human beings (called "positive" eugenics) and getting rid of allegedly undesirable people (called "negative" eugenics). In the United States, eugenics led to, among other things, the enactment of sterilization laws in many states, including California, which by 1929 had sterilized almost twice as many people--some 6,250--as had all other states of the union combined. In Nazi Germany, the eugenics movement prompted the sterilization of several hundred thousand people and helped lead to the death camps.
Some commentators have warned that the human genome project may spark a revival of state programs to intervene in reproductive behavior by fostering sterilization, voluntary or otherwise, to keep "bad" genes from being transmitted in the population. Economics could easily prompt the development of such negative eugenics programs. As health care becomes a public responsibility, funded through taxes, and as the cost escalates, taxpayers may ultimately rebel against paying for the care of those whom genes doom to severe disease or disability. Governments and institutions may come to feel pressure, in the interest of keeping public-health costs down, to encourage, or even to compel, people not to bring genetically disadvantaged children into the world. For example, national health policy might declare that a first child with a genetic disease will be covered but not any subsequent ones similarly afflicted. In recent years, several governments have developed crude eugenics policies. For instance, in 1988, China's Gansu Province adopted a eugenics law that would--so the authorities said--improve "population quality" by banning the marriage of mentally retarded people unless they first submitted to sterilization. …