Guest Editorial
by Gregory L. Fowler, Ph.D., Executive Director, Geneforum

"People should have a say in the technological decisions that affect their lives." - R. E. Sclove in Democracy and Technology(1)

In February 1997, reality borrowed a page from science fiction when a team of British scientists achieved what many believed to be impossible--the successful cloning of a sheep, Dolly, the world's first mammal cloned from adult cells.[2] There was instant recognition that this was more than just another scientific breakthrough. The potential application of this technology to humans raises a host of moral, ethical, and religious questions about who we are, where we come from, and the ends and purposes of our lives. The birth of Dolly also forced us to weigh the value of government regulation against the freedom of scientific inquiry.

Achievements of equal significance will likely arise as a result of the information generated by the Human Genome Project (HGP), the $3 billion scientific world-wide effort to identify and map the estimated 140,000 genes and 3,000,000,000 chemical building blocks of human DNA. Initiated in 1990, the HGP--in collaboration with its international counterpart the Human Genome Organization (HUGO)--is now nearing the midpoint of its 15-year deadline. The completion of the first reference sequence of the human genome is projected by the year 2002.[3]

Together with recent reports describing the isolation and in vitro growth of immortal human stem cells,[4] the development of "personal" gene (bio)chips,[5] bioengineered food[6] and a rekindling of scientific interest in engineering the human germline,[7] one can only imagine what life might be like for citizens of the 21st century.

Will humanity be better off in a distant future where direct modification of the genetics of human germinal cells is legally prohibited, or in a future where gene manipulation is readily available? Should we have concerns about humanity gaining the capacity to control its own evolution? To redesign itself? Were a procedure available for safely implanting a human embryo with an artificial chromosome to increase life expectancy by a decade, should it be used? Is government regulation and labeling of all agricultural products in the marketplace sufficient to satisfy growing world-wide fears that genetically modified (GM) foods might lead to some kind of genetic or environmental public health crisis? The ways in which questions like these are answered-and are transformed into public policy-promise to determine the shape of the world in the next millennium and beyond.

History shows that together science and technology are major shapers of social life on this planet. By changing the ways in which we interact with one another, science and technology influence how we define the general welfare, our views on the role of government, and the approach we take in exercising our rights as global citizens. Today, technological advances are giving humans the ability to intervene where they earlier could not. Consequently, average citizens are faced with choices they had no knowledge of previously.

Indeed, the revolution in knowledge about living organisms, particularly the human, and the ability to manipulate and tinker with life, raises a host of ethical, legal, and social issues. The most pressing fall into six general categories: (1) privacy; (2) abortion; (3) germline manipulation; (4) free will and individual responsibility; (5) genetic reductionism and determinism; and (6) genetic enhancement. Fundamental to all six is the realization that there is no perfect or ideal human genetic constitution to which all others are inferior, as well as the recognition that genetic information should not be used to advance ideological or political agendas. There is a fine line between legitimate uses of genetic information in the care and cure of disease, and the practice of eugenics in a new and powerful form.

It is left to us to confront the double-edged nature of genetic science, individual by individual and community by community. Echoing this sentiment to the world press, Dolly's creator, Ian Wilmut, said, "We believe that it is important that society decides how we want to use this technology and makes sure it prohibits what it wants to prohibit."[8]

To a large extent, however, science policy, particularly in the developed countries, is not formulated by "society" but by elite groups of politicians and scientific experts. As a result, genome science policy issues are usually defined and resolved in the name of the public by a narrow segment of the citizenry that operates outside the electoral process.[9] That this is a growing phenomenon in the United States is particularly unsettling since the security of a democratic society rests equally on the freedom of its citizens as well as their ability and inclination to enter into deliberations deemed necessary for the common good.

An increasingly disturbing feature of modern American society is the retreat of individuals from the public forum wherein broad social and ethical questions are debated. This "privatization" of ethics is dangerous for two reasons: first, leaving ethical questions to a technocratic elite can easily lead to a relativist position where right or wrong is determined largely on the basis of individual "lifestyle" choices. The other risk is that public forums--and public policy by extension--will be informed by those espousing isolated and egocentric moral philosophies.

In his book, Coming to Public Judgement: Making Democracy Work in a Complex World, Daniel Yankelovich asserts that ". . the eroding ability of the American public to participate in the political decisions that affect their lives is threatening the expression of the American Dream, the Dream of self-governance."[10]

In short, discussion of the issues raised by the new genetics needs to be extended beyond the Beltways and the Boardrooms of the world. The enterprise is too important to be left only to the experts. It is time for science policy-notably genome science policy-to welcome new voices and fresh ideas for addressing the social needs of the 21st century. It is time for "the public"--the various subsets of societywhose common good is bound up in the mutual dependency and shared authority of a democracy--to let its views be known by putting itself into the conversation.

The notable lack of citizen input on many societal concerns-particularly in the United States-is usually explained under the rubric of "citizen apathy," the view that citizens do not get involved because they do not care. Decades of public poll data, however, show that this charge falls short of describing reality." As noted by the public outcry of America's cousins in the European Union to the genetic engineering of crops and the patenting of life, it is clear that average citizens, including those that do not vote, hold deep and passionate convictions on many issues raised by genome science.[12]

Responding to calls by leaders in industry, government, and the higher education community to "...provide information and education to the public in the area of genetics and on other developments in the biomedical sciences. . . "is critical for preserving both the process and the product of ethical discussion around the world.[13] The philosopher Leon Kass writes "Our hope can only lie in education... in a public educated about the meanings and limits of science and enlightened in its use of technology."[14]

Informing and educating citizens about the new genetic technologies is not a recipe for inhibiting scientific progress. The more people learn about science and technology, the more they come to accept it. After an intense public debate on genetic engineering, an overwhelming majority of Swiss citizens voted to oppose curbs on biotechnology, contrary to earlier polls predicting precisely the opposite.[15]

We can talk of enhancing the human race by genetically eliminating disease, by choosing even "designing--the babies we want, or by improving behavioral or intellectual traits. But we cannot do so without a clear idea of what we believe an "improvement" to be. A conflict arises between what we, privately, may want and what society as a whole needs.

In order to responsibly address these issues and create a force for positive change in the future, we need to forge a new way of shaping science policy, one that is centered on the participation of informed citizens rather than depending solely on the centers of political power and biogenetic expertise.

The challenge in genome science is to develop educational and community-building strategies on all sides that will at once enhance adult "science literacy" about the new genetics while soliciting the public values and ethical concerns that must properly be considered as part of the legislative policy process.

Toward that end, Geneforum, a new, non-profit organization that works to involve a broad spectrum of communities in the genome science policy-making process through grassroots education and Internet dialogue, was incorporated in Oregon in November 1998.[16]

The Symposium

With its deliberate commitment to identify the ethical, legal, and social implications (ELSI) of its own scientific progress, the HGP is a powerfully illuminating model for how to promote public understanding of science and technology in a manner suited to a new style of participatory policy making.

Informed citizenship is the cornerstone of "participatory" democracy. Deliberative democracy in genome science is the means by which scientists, policy makers, and the public work together to create science policy that expresses community values.

A broad public airing of values, however, must be partnered with expert input in order to ensure that 21st century genome science policy is responsive to social concerns and serves the best interests of society as a whole.

In February 1997, eight such "experts" were invited to participate in a AAAS symposium, "The Human Genome Project: What's the Public Got to do With it?" co-chaired by the present author and Alexander Fowler.[17]

The purpose of this special issue of the Public Understanding of Science is to collect in one place-the perspectives of the symposium presenters, each uniquely poised at this time in human history to offer insights on two questions about the Human Genome Project: (1) Which consequences of the availability of the human DNA sequence will affect the public? and (2) What measures should be taken to prepare the public for that eventuality?

Viewed through the lenses of genome science (G. Evans), sociology (C. Condit), anthropology (F. Jackson), bioethics (E. Juengst), religion (R. Cole-Turner), public policy (M. Frankel), the biotechnology industry (B. Zimmerman), and public health (M. Garland), the symposium sought to address these two questions while exploring multidisciplinary approaches and strategies for stimulating public dialogue that (1) draws on the best available scientific facts about the Human Genome Project (Evans); (2) produces relevant data about public values within a broad spectrum of social communities (Condit, Jackson, Juengst, Cole-Turner, Frankel); and (3) enhances citizen responsibility for the policy choices actually at issue when HGP-related interventions come on line (Zimmerman, Garland).

Collectively, the articles described below seek to answer the layman's question, "What has (HGP) technology got to do with me?" and, more fundamentally, "Is educating scientists and policy makers to respond to the concerns of the public 'doing science in the public interest?."

The Articles

In "The Human Genome Project and Public Policy," Glen A. Evans lays out the science of the HGP and "what the public should know about what is going on." Throughout, he infuses his treatment of the project's recent (technical) history, its goals and timelines, present accomplishments, and its public ethical and social impact, with the "excitement" which pervades the scientific community about this largest government- sponsored science project in the history of biological research."

In her paper, "How the Public Understands Genetics: Non-deterministic and Nondiscriminatory Interpretations of the 'Blueprint' Metaphor," Celeste M. Condit reports the results of a study which suggests that substantial segments of the public are quite capable of making critical judgments and independent interpretations and valuations of the HGP. In her view, traditional public forums and surveys are not effective means to explore public values about complex scientific issues. "Remediation does not lie in technical experts constructing artificial debate venues, pumping the participants full of technical information, and then taking dictation from the outcome." She cautions the media that "care should be taken to present genetics using (communication) frameworks that are non-discriminatory and nondeterministic."

Advances in DNA technology have made widespread genetic testing highly feasible and virtually inevitable. Two central questions remain, however: (1) Will comprehensive molecular genetic testing be harmful to targeted groups? and, once initiated, (2) Will such testing be helpful to these groups?

In the view of Fatimah Jackson, African-Americans should be concerned about whether their sequence data will be included in the reference taxonomic description of Homo sapiens sapiens (Hss) and whether the HGP has followed the best procedures of population biology to ensure equal representation. Indeed, the thesis of her article, "African- American Responses to the Human Genome Project," suggests that the researchers who are mapping the human genome have used such a narrow pool of samples that only whites will benefit from the results. "It is essential that ethnic communities wishing to be included in the HGP be educated about the resolution power of the existing technology (its strengths and limitations) and permitted to meaningfully collaborate in the development of hypotheses, research design, the collection, analysis and interpretation of data, andthe development of subsequent policy initiatives," she writes.

Eric Juengst focuses on what the Human Genome Project has to do with the "public" at a relatively fine level of granularity: at the level of the individual families which make up the public.

Believing that one of the largest, but most neglected, effects of genome research will be the complications that increased genetic risk testing will create for extended families, his article, "Genetic Testing and the Moral Dynamics of Family Life," raises questions about what it means to have biological kin. "Do I have any familial obligations to cooperate with kin intent on learning their (our) genetic risks?," he asks. "Do they have any familial obligations to disclose the risks they discover to me and mine?"

Within this context, the kinds of "familial ethics" questions that the public should expect to face in the wake of increased genetic risk testing are discussed from the perspectives of three different kinds of American families.

In his article "Faith Meets the Human Genome Project: Religious Factors in the Public Response to Genetics," Ronald Cole-Turner examines the various strands of genetic screening and testing through a theological lens. Genetic counseling is usually guided by the principle of non-directiveness, which is based in part on the basic bioethics principle of autonomy. Its observance means that the religious concerns of patients or counselees should be respected, and the desire of counselees to involve clergy should be granted.

With some exceptions, it is the case that in various strands of the Christian tradition, the religious and moral concerns that bear upon the uses of genetic screening and testing are not yet clearly identified by those who hold teaching or moral responsibility within those strands. Nevertheless, the implicit concerns of such issues as guilt, the status of the fetus, the meaning of suffering, and the question of life after death may play a highly significant role in determining the use that will actually be made of genetic diagnosis and the decision-making process that the patient will subsequently employ.

"Advances in genetics research have fueled public debate (about the possible discriminatory) use of genetic information about individuals and families by health insurers," writes Mark Frankel. His article, "Genetic Privacy, Discrimination, and the U.S. Congress." examines how the U.S. Congress-the people's representatives-has defined the issues of privacy and discrimination and attempted to respond to them in the context of one of the country's most public institutions. The "data" for this examination come from several pieces of legislation introduced in the 104th, 105th, and (early) 106th Congresses and hearings held in association with those bills. In the process he identifies the key actors--and their interests who have been involved in pressing Congress to take action on these issues and the very prominent role that scientific discovery has played in placing these matters on the Congressional agenda.

Defining "the public" as "the current and prospective users of biotechnology developed on the basis of information gained through the Human Genome Project," Burke Zimmerman writes of professional responsibility and public concerns about the global efforts of obtaining human and non-human DNA base sequence data and genetic maps.

In his article, "The Use of Genetic Information and Public Accountability," he explores the boundary between the responsibility of the professional and the duty of society, through its legal and policy-making mechanisms, to set guidelines and promote or regulate the use of such technologies and information in the "public interest." Along the way, he offers reasons why aggressive information and education campaigns-both publicly and privately supported-are needed to overcome the lack of accurate information, genetic essentialism, and sensationalized misinformation that lie at the bottom of growing public concern about the proliferation of genetic information.

Drawing on nearly 15 years of work with Oregon Health Decisions, a civic organization dedicated to facilitating public participation in health policy issues in Oregon, Michael Garland argues in favor of public participation and describes the Health Decisions (HD) approach, a model for "deliberative" democracy that rests on the division of labor between scientific experts, the public, and policy makers.

In "Experts and the Public: a Needed Partnership for Genetic Policy," he writes that "the public must articulate the values which point to desirable goals. Genetic experts must generate the scientific facts and probabilities which show how to achieve society's goals. The arena of public policy is where these two tasks come together in the form of laws, regulations, and allocation of collective resources."

Summary

The field of genetics is poised for major beneficial new developments. These will be needlessly delayed unless scientists and the public are ready to walk into that promising future together.

Failing to tap into the significance citizens attach to genome science will only further erode public confidence in the scientific discoveries that lie ahead. A recent nationwide survey found that 53 percent of the respondents agree with the statement, "Because of their knowledge, scientific researchers possess powers that make them dangerous."[18] We should take care not to fan these fears further.

What humanity will do with the new genetic knowledge is not clear. The continuum of responses range from fearful predictions of dire consequences to bold visions of disease eradication and perfected human stock.

Similarly, the role that national and global citizens ought to take in responding to the new human possibilities flowing from the Human Genome Project is also not certain. The question of what, if any, priorities should guide investments in new genetic interventions is on everyone's mind.

The near-future possibility of non-therapeutic gerrnline genetic modification in humans is the quintessential technological wake-up call to all people. Without that discussion-and a (re)building of lines of communication between genome scientists and the public-the world painted by the recent film Gattaca may well prove to be only a pale imitation of the coming reality.

It is time to get involved in the discussion about our own genetic future.

Acknowledgments

Partial support for the AAAS symposium which stimulated this issue was provided by a grant from the U.S. Department of Energy (DE-FG02-97ER62380) with sponsorship by the Scientific Freedom, Responsibility and Law Program, American Association for the Advancement of Science. The views expressed here do not necessarily reflect those of the Department of Energy or the American Association for the Advancement of Science.

References

1. R. E. Sclove, Democracy and Technology (New York: Guilford Publications, 1995).
2. G. Kolata, "Scientist Reports First Cloning Ever of Adult Mammal," New York Times (February 2, 1997).
3. "Human Genome Count Rising," Reuters News Service (22 September 1999).
4. S. Begley, "From Human Embryos; Hope for 'Spare Parts,' " Newsweek (November 16, 1998): 73.
5. I. Wickelgren, "Gene Readers," Popular Science (November 1998): 56-6 1.
6. For an overview, see "Who's Afraid of Genetically Modified Foods?:' The Economist (June 19-25, 1999): 15-16;19-21.
7. E. Juengst, "What does Enhancement Mean?" In Enhancing Human Traits: Ethical and Social Implications,ed. M. J. Hansen and D. Callahan (Washington, D.C.: Hastings Center for Studies in Ethics/Georgetown University Press, 1998), 29-45.
8. As quoted in G. Kolata's New York Times article, "Scientist Reports First Cloning Ever of Adult Mammal." February 2, 1997.
9. E. H. Hiller, G. Landenburger, and M. R. Natowicz, "Public Participation in Medical Policy-making and the Status of Consumer Autonomy: the Example of Newbom-screening Programs in the United States," American Journal of Public Health 87 (1997): 1280-1288.
10. D. Yankelovich Coming to Public Judgment: Making Democracy Work in a Complex World (Syracuse, New York: Syracuse University Press, 1991).
11. B. Barber, Strong Democracy: Participatory Politics for a New Age (Berkeley: University of California Press, 1984).
12. D. Johnson, "France's Fickle Appetite," New York Times (August 2, 1999).
13. Cloning Human Beings, Report and Recommendations of the National Bioethics Advisory Commission (Rockville, Maryland, June 1997).
14. As quoted in C. A. Rimmerman, "Democracy and Critical Education for Citizenship," PS: Political Science and Politics (September 24, 1991).
15. R. M. Zinkemagel, "Gene Technology and Democracy (Editorial)," Science 278 (November 14, 1998): 1207.
16. More information about Geneforum is available at the website: www.geneforum.org.
17. See the website and listen to the symposium presentations on RealAudio at: www.aaas.org/spp/dspp/sfrU projects/hgdpfhgp.htm.
18. As quoted in G. Sapp, "Science at the Ethical Frontier," Library Journal (March 1, 1994).