The Genome Project: More Than a Medical Milestone

Two scientific teams, one public and one private, jointly announced in June that their researchers, working separately, had deciphered the human genetic code. Elation in the scientific community and extensive media coverage signaled the importance of their accomplishment for the capabilities of medical science in the third millennium. Basic knowledge about human biology and about processes, conditions and even behaviors and mental states linked to biology is promised by this advance. Beyond this, the accomplishment opens multiple avenues to the prevention or treatment of disease and the improvement of human health and capabilities. While some caution that clinical applications will come slowly, others predict that genomics will soon revolutionize the practice of medicine and extend the average human life span beyond 90 years within the next half century.

As one example, the new science of regenerative medicine exploits the body’s internal communications system to help it respond to damage and disease by repairing tissue and bolstering the immune system. Personalized medicine is also on the horizon, offering drugs tailored to the individual genetic makeup of the patient, thus enhancing the effectiveness of treatments for ailments like cancer, heart disease and some forms of mental illness. To the extent that diseases may be linked to specific genes, genetic testing will also be able to identify who may have a proclivity toward a certain affliction, allowing preventative measures to be taken. Diagnostic testing raises the possibility of detecting genetic liabilities in utero, or even at the embryonic stage. Medical science may be able to intervene in germ cells or embryos to remove or change a gene, so that its effects would not only be prevented in one individual, but also would not be passed on to the next generation.

Such possibilities raise the question of what to count as a defect, how to gauge the seriousness of a genetic threat and how to evaluate the appropriate course of action given the presence of such a threat. Yet attempts to avoid illness may cause unexpected harms, since genes are complex and their functions not fully understood. Moreover, the genome of every individual is sure to contain errors, whose consequences will depend on many factors, including interaction with other genes, environment, medical care, lifestyle and even culture.

Issues of confidentiality and social control take these questions a step further, into the economic and political realms. Is genetic information completely private, or should access be given to family members, insurers, employers or public health agencies? What about screening, counseling and treatment programs? Should they be mandatory or optional, publicly or privately funded, universal or targeted at suspect populations? If screening and treatment are available, will that result in less tolerance for persons with genetic disabilities? On the other hand, genetic science will be able to identify links to positive traits like intelligence, memory or socially desirable details of appearance. Is it just as valid to enhance the genetic code as it is to remove or cure pathologies? What is to count as a genuine improvement, and who will be able to obtain one?

The Common Good

While American anxieties about the genetic future typically focus on whether personal rights will be protected, and while Catholic objections focus on whether embryos are involved and abortion encouraged, the social issues posed by this year’s leap in genetic science are much broader than either set of concerns. As Catholic social tradition teaches, concern for justice goes beyond individuals to consider the common good, and evaluation of any particular social development includes consideration of its effects on the interdependent welfare of all. Today, in the era of transnational corporations, joint international efforts to contain violence and alleviate natural disasters, and a growing sense of shared responsibility for the environment, the term common good has an ever more global meaning.

Most commentators on the Human Genome Project have been quick to note that the pertinent ethical and social questions are almost as numerous as the genome’s three billion chemical letters, and nearly as difficult to resolve as the animosities between the rival researchers who shared the stage in announcing their discovery (The New York Times, 6/27). Some of these questions have to do with the roles of science and technology in modern culture; some with the relation between biology and personhood; some with individual rights and the common good; some with the way the benefits of medical breakthroughs are distributed within communities and around the world; and some with the insights genetic understanding might provide into the things human beings share in common.

Careful reflection on such issues, even if they cannot be easily resolved, will be essential in defining a humane role for science and technology in a global culture already riven by inequalities and driven by market interests. The moral ambivalence of the Human Genome Project and its power as a cultural symbol are obvious when one considers the imaginative use of metaphors that project investigators, politicians, ethicists and journalists select to capture the aspects of the research that they consider most promising, pioneering, profitable or provocative.

History of the Project

First, a brief history. The Human Genome Project (H.G.P.) began in 1990 as an international consortium of scientific teams. It planned to map systematically the entire human genome by the year 2005 on a budget of $3 billion. The major supporters of the H.G.P. are the Wellcome Trust, a large medical charity in the United Kingdom, and the U.S. federal government’s National Institutes of Health. The H.G.P.’s leaders are the N.I.H.’s James D. Watson, his successor, Francis S. Collins, and John E. Sulston, director of the Sanger Center in Cambridge, England. They have made a point of seeking out international collaborators. These include experts in Germany, France, Japan and China, all of whom have made important contributions to the recent success of the project.

In 1998, about midway through the 15-year research process, the H.G.P. received a surprise challenge from a private, for-profit corporation, Celera Genomics, headed by J. Craig Venter, a former N.I.H. researcher. Intent on getting immediate practical results from genetic knowledge, and on patenting and using that knowledge not only to address medical needs, but also to make profits by selling subscriptions to Celera’s data base, Venter proposed to sequence the human genome by 2003. His proposal featured a new method that gave speed priority over thoroughness and built on information that had been made public by the H.G.P. (Celera, in turn, has denied public access to its own results.) In response, the public consortium moved its projected completion date to 2003 as well. What was announced in June 2000 by the two teams was the completion of a rough draft of about 90 percent of the genome, with the remainder to be filled in later.

The fact that the rivals made their discoveries public jointly at the White House, in the presence of U.S. President Bill Clinton and British Prime Minister Tony Blair (by satellite), signaled mutual accommodation between academic, political and business interests in genetics, and an apparent commitment to place American research in the context of international cooperation.

Metaphor as Political Art

Finding the right image to express excitement and capture the public imagination seems to evoke almost as much of the competitive spirit as the scientific race. It is also an exercise in metaphor-making as political act. Among the more overused images for the genome or its sequencing, many come from the technical world of construction, machinery and computers. Some that appeared in The New York Times on the day of the announcement include: set of instructions, instruction manual, manual of the human machine, blueprint, programming code, master parts list and model of high performance. These metaphors connote a strong, even deterministic, correlation between genetics and human function, downplaying the role of environmental and social factors.

Other metaphors are textual, though not mechanical, and seem to suggest a more complex and culturally mediated relation between genetics and the person: human genetic library, book of life, booklet of life, code to life on earth, working draft and atlas. Another high-profile category of imagery alludes to pioneering, voyages of discovery and the conquest of frontiers. This category works to place genetic science in a noble social context. It easily invokes the honor and idealism that U.S. audiences willingly attach to their own national history and the supposed moral mandate that lies behind American claims to international precedence. Other metaphors are religious and refer to creation, divine knowledge and divine control over nature. Generally used to evoke awe at genetic discovery, they can also be used by critics to suggest the hubris involved in intruding on divine sovereignty.

Climate of Public Debate

President Clinton opened his press conference remarks by recalling the presentation to Thomas Jefferson of Merriwether Lewis’s map of his courageous expedition across the American frontier, a map Jefferson had long prayed he would get to see and that expanded the frontiers of our continent. To enhance the impression of divine blessing on a venture that brought wealth and power to some, hardship to many and extermination to whole native peoples, and to bring this newest form of American know-how and conquest under the aegis of their forefathers’ prestige, Clinton continued: Today we are learning the language in which God created life. We are gaining ever more awe for the complexity, the beauty, the wonder of God’s most divine and sacred gift. He concluded his speech by making the decoding of the genome key to the greatest age of discovery ever known.

To be fair to the president’s moral agenda, he is trying to balance justice, rights and commercial interest in devising a directional compass for those forging ahead along the trail of genetic discovery. Remembering no doubt that the public sharing of research that he and Blair advocated last March resulted in a drastic sell-off of biotechnology stocks, Clinton emphasized that competition and biotechnology companies are absolutely essential to scientific progress; but he also warned that public-private cooperation must be enhanced, privacy protected and discrimination prevented. The benefits of genetic science must be directed toward making life better for all citizens of the world, never just a privileged few.

Tony Blair spoke of Anglo-American scientific partnership, but avoided any imagery suggestive of genetic neo-colonialism. Reflecting a perhaps more European sense of public solidarity, he referred to the human genome as common property and held up a duty to use it freely for the good of the whole human race. Here he reflected the language and concerns of the 1997 UNESCO Universal Declaration on the Human Genome and Human Rights, which refers to the human genome as underlying the fundamental unity of all members of the human family and as belonging to the common heritage of humanity, the benefits of which belong to all (see Articles 1 and 12).

What is at stake here is the public or private character of knowledge about genes, the patentability of life forms and of genetic knowledge and the right to retain control over intellectual property so as to protect profits, or the duty to make knowledge and beneficial application available to a wide circle of potential beneficiaries. While Clinton’s invocation of the pioneering spirit encouraged cultural approval of the genetic entrepreneur, Blair stressed public responsibility for health, and in his concluding line urged that the threats of genetic developments be minimized with equal vigor. The rhetoric used to present the decoding of the human genome is both a shaper and an indicator of the climate of public debate about genetics and biotechnology, and it reveals many of the complexities, even contradictions, of cultural attitudes toward the ethical and social questions they pose.

The Challenges

Some of the challenges implied by genetics research can be addressed in relation to a framework of the common good as envisioned by Catholic social teaching (Pastoral Constitution on the Church in the Modern World, No. 26). Simply stated, this framework defines justice in terms of the common good of a whole society and all its members, with society being given an increasingly global range. Justice is an objective criterion of moral relationships that sees persons, groups and communities as interdependent and as having an equal right to share in the material and social conditions of human well-being. No one has a right to private property gained at the expense of the basic human needs of other persons or groups. Active efforts must be made to include those who have previously been excluded from participation in the common good (that is, the preferential option for the poor).

According to the principle of subsidiarity, government should not control activities that can be successfully carried out at the local level, nor should it neglect to direct and coordinate such enterprises to the extent necessary to serve justice. The challenges involved here can be grouped as follows.

The social role of science and technology. The importance of the furor about the genome goes beyond its medical implications. It represents the confluence in the modern age of science as the most respected mode of knowledge, medicine as a new priesthood whose altruism is assumed and the economy as the most important social institution for defining power and control over social resources. Scientists who can promise health benefits are portrayed as the saviors of humanity and as our redeemers from human suffering. Profits and acclaim may encourage researchers to welcome this role, but the public is also responsible for entrusting to, even demanding from, science and technology the alleviation of social and personal problems that deserve a more holistic and realistic response.

By emphasizing that the common good refers to all the conditions of social living, and subordinating the temporal common good to our eternal one, Catholic tradition warns us not to place too much trust in even the most worthy human solutions to suffering, even though any humane solution should be earnestly pursued. Like technologies once harnessed for purposes of military and territorial conquest (in the last century, building the atomic bomb or putting a man on the moon), technology in medical guise may turn out to be another means of power-seeking, and its consequences should be predicted with moral and social circumspection.

Persons, meaning and culture. Biological reductionism is one danger of genetic science. For one thing, not even health and disease can be explained by purely biogenetic causes. Moreover, even though genetics is showing that mental states and personality characteristics can be heavily influenced by genes, the age-old cultures of the world attest that humanity has a spiritual and transcendent side that unites our embodied physicality with something that makes our species unique. Persons, not genes, make possible culture, art, religion, philosophy and self-conscious, other-regarding love. Animals may come close to these experiences, and robots someday may do so, but most people remain rightly convinced that there is something uniquely human about their meaning for us. For this reason, Catholic social and moral teaching puts the person squarely at the center of social relations and affirms the inviolable uniqueness and dignity of each, as well as the person’s orientation to God. The New York Times science writer Natalie Angier finds a metaphor that leaves such possibilities open when she writes that the human genome is a human dream: rich with significance, personal yet universal, stuffed with nonsense, all out of order yet suffused with its own mad logic.

Rights and the common good. Those who herald the success of genomics hold up the alleviation of disease and the prerogative of the scientist or his corporation to capitalize on genetic knowledge. Often lost from view is the fact that neither medical nor commercial benefits will be universally shared. While North Americans and Europeans seek answers to cancer and other enigmatic diseases, millions around the world die from already treatable causes like malaria, anemia and tuberculosis. Does it serve the common good even in the United States to provide new genetic treatments for the privileged while so many go uninsured? Does it serve the global common good to devote billions to new genetic inventions while more basic health needs are so dire, and while great gaps in other basic needs such as food, housing, education and clean water bring early death to many?

An agenda-setting conference held in the United States in 1991 by the Ethical, Legal and Social Issues (ELSI) program of the H.G.P. highlighted insurance, employment and the civil liberties of suspected criminals subjected to genetic testing as key moral topics. In 1999 an international conference on biotechnology in the global economy held at Harvard University addressed the needs of developing countries, long-term health and environmental impacts, and the need for international cooperation in forming institutions that harmonize research, marketing, regulation and application of biotechnologies. The Catholic common-good tradition urges a broad perspective as essential to any truly adequate moral analysis, the bottom line of which will be a preferential option for the poor.

Market, profits, patents. A recurrent theme and concern in assessing the Human Genome Project has been the force of the profit motive in defining and accelerating research. For instance, treatments for diseases that affect the most people in the most developed parts of the world will be developed first by pharmaceutical companies. Typically, researchers want to patent any potentially useful knowledge about genes as fast as possible (even before they have figured out a specific use) so that this knowledge can be sold to drug companies. This is why Celera has not routinely publicized its own research findings in the manner of the H.G.P.

One justification for patents is that they provide incentive for investment and work in areas that are potentially of benefit to many. But the downside is that they channel resources toward only the most profitable research and help limit accessibility to those who can pay. This is why a Catholic group called International Cooperation for Development and Solidarity (CIDSE), with headquarters in Brussels, has taken the position that some international trade agreements, including those on intellectual property rights, are structuring economic globalization and trade liberalization to the advantage of the world’s richest nations, especially those in control of the World Trade Organization. Similar concerns apply to the welfare of marginalized groups within the wealthy nations. In a report on biopatenting and food security, CIDSE calls upon the international community to ensure that biological resources are used sustainably and that benefits from their use are justly shared.

Human nature. The danger of reducing human nature to genes has been mentioned. But acknowledging the genetic component of human identity does lend support to the longstanding claim of Catholic morality that we all share certain basic needs and purposes in common, and that a moral society should serve genuine human needs and help us achieve those purposes that truly enhance persons and communities. Though too often underplayed in the interest of respecting cultural diversity, recognition of some basic human commonality is the only plausible foundation of international standards of justice and rights. As President Clinton noted at the White House, in genetic terms all human persons are 99.9 percent the same. What that means is that modern science has confirmed what we first learned from ancient faiths. The most important fact of life on this earth is our common humanity.

Although religion, politics and culture can create violently divisive ideologies instead of bringing us together, the genome gives us a modern-day symbol for our unity. If we can recognize the unity of all people in the common good, then perhaps we have a chance to reap the benefits of genetic discovery, while avoiding the more pernicious abuses.

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