The sequence of the human genome — all of the hereditary material in our cells — was completed in April 2003. An observer of the celebrations might have thought that genetics had come to its concluding act and all the rest would be denouement. Perhaps history will show that we have completed the first act, but we are certainly no farther along, if for no other reason than that the science, if left to itself, must by its very nature remain incomplete. Science is only of value when it is used, and that requires it to be placed in the broader social context.
The 13-year effort to sequence the 3.2 billion base pairs of DNA in the human genome was indeed a scientific tour de force. But the genetics community and the media were guilty of “genohype,” to use a term coined by Neil A. Holtzman of Johns Hopkins University. The true challenge of genetics and genomics will be to understand the potential impact of the science on us as individuals and as members of social groups.
We hear much about the “genomic revolution” and how the ability to read the “blueprint of life” will lead to the prevention and amelioration of disease. But if we really argue that genomic, or DNA-based, medicine will have immediate and broad impact, then it might be said that such claims of immediate benefit are also premature, pretentious and preposterous.
Is it also premature to consider the possible impact of genetics and genomics on society? Clearly the public would express a loud and resounding no! In response to public concerns, the administrations of Presidents Bill Clinton and George W. Bush both established advisory committees to their secretaries of health and human services. The initial and persistent issue for each committee has been, and continues to be, genetic discrimination — an issue of great significance that we in fact have seen already starting to play out in our courts. As a measure of the consensus on this issue, the U.S. Senate in October 2003 passed the Genetic Information Nondiscrimination Act of 2003 with a unanimous 95-0 vote. In case anyone thinks that bipartisanship was triumphant in the Capitol, be reassured that the bill was held up in the House of Representatives and at the time of this writing has little hope of passage by the 108th Congress.
Is UCLA the right institution to address the societal implications of genetics — how this new knowledge, for example, affects the way we view ourselves in relation to other creatures on Earth; the potential for commercialization of this knowledge; whether genetic knowledge will be a tool to forecast our individual futures? Yes. As a nuclear engineer who was actively engaged in international negotiations to limit the proliferation of nuclear weapons, UCLA Chancellor Albert Carnesale recognizes parallels with genetics and genomics, and he is quoted as saying of the Human Genome Project: “We have just come through the Manhattan Project of biology; let’s get it right this time.” The critical ingredients for such an exploration are individuals, expertise and commitment, and UCLA most definitely has all of these.
One of the chancellor’s initiatives involved the examination of the interface of genetics and society, and in November 2001 the UCLA Center for Society, the Individual and Genetics was created. Now called the UCLA Center for Society and Genetics, it is engaged with individuals from across the UCLA campus, including students and faculty from the humanities, the sciences and the professional schools, to investigate the coevolution, or mutually dependent interactions, of society and genetics.
What are the challenges imposed by a consideration of society and genetics?
Genetic determinism: Some would argue that the promise of the Human Genome Project, the eventual ability to obtain an individual’s complete genomic sequence, will permit us to know the individual’s future — a technologically based look at predestination. But we know that the expression of any individual’s genome is far more malleable than previously appreciated. The interaction of each individual’s environmental experience with her/his genome leads to that person’s identity. We observe this for identical twins: While they may share some characteristics, they and we recognize their independent qualities. An extension of these observations is to refute the concern that if human cloning should become possible and acceptable in the future, then the clones of an individual will be identical automatons. The clones, with different developmental environments and experiences, would be independent beings, similar to identical twins, and, since they would grow up in different environments, they would be more like identical twins reared apart.
Coevolution of society and genetics: This is a concept identified by Professor of History Norton Wise, the co-director of the center, to represent the mutual influences and adaptations between society and genetics. The issues to be considered are not simply the influences of genetics and the Human Genome Project on society, nor the effects of society on the science of genetics, but rather the two-way nature of these influences and coadaptations. We are, for example, learning that an individual’s early behavioral experiences can alter the expression patterns of genes throughout his or her lifetime. Inadequate nutrition to the developing fetus within the womb can, for instance, lead to increased risks for obesity, diabetes and heart disease in adulthood. This means that individuals with the inherited genetic makeup may have different disease risks based on their early environmental exposures. Therefore, there is a complex interaction of the individual’s genes and environment that results in a unique individual identity for that person.
Relationship of humans to other life on Earth: Copernicus argued that the Earth was not the center of the solar system, and Galileo carried out the astronomical observations that confirmed that the Earth with the other planets rotated around the Sun, and not vice versa. The sequencing of the genomes of humans and many other species is showing us that humans are far more similar to other forms of life — not only to other mammals and vertebrates, but to all life, including plants and bacteria — than had been previously appreciated. A family of genes involved in organization of the body plan in fruit flies, for example, is structured and activated similarly to that for humans. We have drawn an analogy with the earlier change in thinking about our solar system and have referred to this as “the Copernican revolution in biology.” The consequence of this evolution in our thinking is that we can extrapolate from observations in other organisms to improve our understanding of human development and disease. This allows us, for example, to insert or delete genes in mice to mimic human disease and to test potentially relevant therapies. Similarly, we can create human-disease models in fruit flies and bacteria. It also suggests that the vast number of species on Earth represent more a matrix than a hierarchy, with humans embedded within that matrix rather than having a unique central role within biology. We can only hope that a better understanding of our position in the matrixed biosphere will also provide us with a deeper sense of responsibility for the other forms of life with which we coexist.
Direct-to-consumer marketing of genetic testing: An increasing number of genetic tests are being marketed directly to consumers by way of the Internet. The claims of some of these advertisements are spurious — for example, gene profiling prior to recommending nutritional supplements or skin-care products. Even for those claims that are firmly fact-based, the interpretation of the results of the testing may be quite complex and difficult.
Genetic discrimination: The fear of genetic discrimination is a continuing and significant concern of the American people. The scientific genetics literature argues that there is no basis for this fear despite reports of individuals’ experiences of discriminatory behavior in employment and insurance. In one case, for example, a woman with an exemplary work record was fired from her job after her employer learned that she had tested positive for a genetic mutation associated with emphysema. Genetic discrimination, therefore, is a topic that deserves more than the cursory dismissal that it often receives from the genetics community, particularly since the U.S. Equal Employment Opportunities Commission has prosecuted cases, including the one cited here.
Thus we can see that the impact of the Human Genome Project depends on our ability to educate the public about not only the advances in genetics, but also their limitations. We have to develop an understanding of how genomics contributes to our understanding of who we are. We need to consider the interaction of our genes and our environment. The UCLA Center for Society and Genetics will be critical in these quests.
