This article appeared in Professional Ethics Report,
Volume X (1), Winter 1997, Page 1
Democratizing The Gene Age
By Gregory Fowler*
The practice of science in the twenty-first Century will be different.
Application is fast becoming the dominant operative term. In light of
the Human Genome Project (HGP)--the $3 billion, fifteen-year effort
to identify and map the 100,000 genes and three billion chemical building
blocks that make up Human DNA--the stuff of science fiction doesn't
seem so fanciful anymore. "Genome science" will continue to touch off
new waves of debate over the ethical and social implications of the
application of such feats as "nuclear transplantation" and eventually
human germ-line gene therapy. In the process, concerns, fears, misperceptions
and misconceptions among the public are fueled while the experts ponder
legislative alternatives. How ought the debate over these issues be
structured? In his book, Coming to Public Judgment: 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."[1] Richard Sclove echoes that
sentiment in his book Democracy and Technology: "...people should have
a say in the technological decisions that affect their lives."[2] Indeed,
almost twenty years after molecular biologists convened the Asilomar
Conference to consider the social implications of recombinant DNA and
the creation of the Ethical, Legal and Social Implications Program of
the HGP in 1988 the issue of "doing science in the public interest"
is still with us.
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 suited to a new style of policy making by
a participating citizenry. Toward achieving that objective, nine scholars--drawn
from the disciplines of genome science (Glen A. Evans), bioethics (Eric
Juengst), education (David Micklos), anthropology/biology (Fatimiah
Jackson), communication (Celeste Condit), ethics/health care (Michael
Garland), biotechnology (Burke Zimmerman), theology (Ronald Cole-Turner),
and public policy (Mark Frankel)--were convened as a panel to discuss
"The Human Genome Project: What's The Public Got To Do With It?" as
part of the AAAS Annual Meeting in Seattle, Washington last February.
The focus of the all-day Symposium was to lay a foundation for exploring
substantive approaches and strategies for stimulating public dialogue
that produces relevant data about public values and stimulates widespread
enhancement of citizen responsibility for the policy choices associated
with HGP-related interventions. More specifically, the symposium was
designed to offer multidisciplinary perspective on two questions about
the HGP: 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? In the process, the symposium
sought to answer the layman's question, "What has this got to do with
me?" and, more fundamentally, "Is educating scientists to respond to
the concerns of the public doing science in the public interest?"
Trying to put some definitional constraints on the label, "the public,"
was our first order of business. A month-long pre-symposium cyberdiscussion
among all nine panelists and the two conference organizers delivered
only one consensus on that label: that no one definition is adequate.
The range predictably mirrored the disciplines of the panelists. From
the social sciences side of the panel came such definitions as: "A broad
spectrum of individuals who share their values and social narratives
to the construction of a social discourse;" and "All those whose common
good is bound up in the mutual dependency and shared authority of a
democracy." On the other end of the spectrum, the natural scientists
defined "the public" as "the U.S. taxpayer" or that public constituency
who is "paying for the generation of this information and its deposition
into the public domain." In general, the panelists' collective view
of the public, which needs to be kept "broad and inclusive," comprises
a wide spectrum of individuals who share their values and social narratives
to the construction of a social discourse. The various subsets of the
"many publics" include: ethnic and religious communities, extended family
members, and the current and prospective users of technology. The size,
composition, education and financial security of each will predictably
play a role in the type, level and quality of participation in discourse
about the HGP.
On the basis of everyone's ability to carry on some kind of discourse,
in the panel's view "the public" is, then, "everyone" especially those
who should play a role in shaping how society should deploy technologies
and the information correlated with them. In other words, "The mothers
and fathers and sisters and brothers and neighbors and strangers who
live in the communities where genetic events occur and genetic 'fixes'
offer hope and fear."
The second major aim of the Seattle Symposium was to shed light on
some real-time strategies for involving the public in the policy-making
process concerning the application of HGP-related technologies. A synthesis
of a few panelists' remarks suggests that this process will require
at least three-steps: 1) identification and connection with "public
values" through public discourse; followed by 2) a channeling of those
values through the proper "receptor site(s)" into 3) the policy-making
process. But how to accomplish these goals generated much discussion
among panelists and the audience.
"Create a public scandal," "Insult some group," "Get written into a
prime-time script" would certainly "get the ball rolling" in the view
of one of the panelists. As we have observed in the past, media sensationalism
can provide a useful springboard for generating major public discussions
of science policy. In addition, the media admirably serves as the means
for creating a "lay constituency" and a "lay cause" dedicated to achieving
its ends through protest.
While effective in the short term, protest strategies are not useful
for laying the foundation on which sustained discussion and understanding
of issues can be built within the lay community. Stimulating a well-informed
conversation where many voices are heard and all reasonable perspectives
are given due consideration--a process aimed at empowering the individual
participant to think for him or herself--is a much more potent learning
tool. These horizontal discussions are designed to build a partnership
between experts and the general public. Public fora and traditional
surveys were not considered by many of the panelists to be effective
means to this end. "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." What is needed,
in the words of one of the panelists and co-founder of Oregon Health
Decisions (a civic organization dedicated to facilitating public
participation in health policy issues in Oregon), is a shift from "trying
to educate the public (communication from scientists and lawyers toward
the public)...to...finding out about [or exploring] the public's values
relative to a specific policy issue." This will involve three broad
goals: 1) education, 2) transfer of information, and 3) nourishing the
sense of the American community weakened by "hyper individualism," "alienation
from political life," "cynicism about politics and power," and "a feeling
of being voiceless in political matters." Confirming the challenge which
lies ahead is the sobering statistic that 53 percent of the public agree
that "...because of their knowledge, scientific researchers possess
powers that make them dangerous."[3]
Several of the panelists emphasized the critical aspect of "education"
as central to the process of achieving "scientific literacy," inferring
that a basic understanding of the HGP by the public would be required
for meaningful participation in any policy-making decision regarding
its application. That this process should be concentrated in the primary
and secondary school curriculum, in lieu of strategies designed for
the extant adult population, was one of the Symposium's more hotly-debated
issues.
There is no doubt that enhanced science education in the primary and
secondary schools is a major key to the challenges of helping to reinvigorate
"participatory democracy" in this country, and with regard to the HGP,
to change our thinking about science, in general, and (the new) genetics,
in particular. However, in the long-term, it is not prudent to design
strategies that leave the adult laity, including those drawn from all
ethnic communities, out of the conversation. In the view of one panelist
who has collected survey data to gauge perceptions of genetic determinism
in U.S. society, "Substantial segments of the [adult] public are capable
of making critical judgments and independent interpretations and valuations
of the HGP." In that "communitarian" sense, the electric shock given
to the implanted egg which ultimately became "Dolly the Sheep" may have
simultaneously reawakened the necessary link between science and society.
Indeed, that single experiment may have been more effective in engaging
average citizens in a public debate about genome science than the $8
million spent each year since 1991 by the HGP's Ethical, Legal, Social
Implications Program. Is there a lesson here? In the words of David
Cox, a member of the newly-created National Bioethics Advisory Commission,
"Just because something is scientifically right and proven, it isn't
the end of the story. You have to consider how that fact is going to
be parlayed into people's lives."[4]
The Symposium raised a long list of concerns, any one of which would
warrant at least another full-day session: 1) The widening gulf between
the "technocrat class" and "the lay public"; 2) Communicating increasingly
complex scientific information to a scientifically-illiterate public;
3) Insuring the equal representation of ethnic minorities in the HGP sequence
data to be included in the reference taxonomic description of Homo sapiens
sapiens; 4) The need for ethicists and genetic counselors to integrate
better the religious (moral) concerns with the ethical decision-making
process regarding the use of information from HGP-related diagnostic procedures
and, of course, 5) Ensuring that "public values" will not be systematically
overlooked by any alternative for involving the public in the policy-making
process.
Ironically, it was the issue of how to define, and meaningfully use,
the term "public values" and the relationship of "values" to the decision-making
process that generated the most discussion among the panelists and produced
the least consensus. Of "opinions," and "attitudes," "values" are the
most stable, enduring, and fundamental of the three categories of "public
opinion." "Facts" and rationally-projected probabilities are what we
want to leave to scientists. It is only for "values"--those qualities
in the world that attract or repel one--that we want to go to the public.
As one panelist mused, "A difficult word, all in all."
If the Symposium did nothing else, it once again underscored the need
for better communication between the scientific and the non-scientific
communities. In the words of one panelist, "The 'scientifically proficient'
don't trust 'the others' to be able to get it all straight enough to
have anything sensible to say about public policy affecting either research
or its applications. The 'scientifically-illiterate' don't want to parade
their ignorance and keep quiet and direct their discussion toward 'values'
since that is what they can bring to discussion of the 'ethical, legal,
and social implications' of the HGP. The general public stays passive,
keeps quiet, hopes for good things, or fears bad things depending on
which popular journals they read or other media they use to nourish
their minds."
The Human Genome Project is scheduled to close up shop in 2005. And
when it does, ELSI's activism on behalf of "public interest science"
may shut down as well. Enhancing the practice of democracy in the name
of making social responsibility for the common good of our community
a substantive task, a possible task, a reasonable task, and a shared
task between the genome scientist and the "general public" will then
fall to us. However difficult this will be, it is an exercise absolutely
critical to the (re)building of an effective, engaged and democratic
citizenry--without which the "American Dream" of self-governance will
never be fully realized. As one audience member remarked at the end
of the day, "I came here expecting to once more hear about the myriad
of issues raised by human genome research. Instead, I walked into a
real public debate. We need more of these at scientific meetings."
* Gregory Fowler is Professor of Biology and Director, Churchill Scholars
Honors Program at Southern Oregon University in Ashland, Oregon. He
is also a Clinical Associate Professor in the Department of Public Health
and Preventative Medicine at Oregon Health Sciences University, Portland.
Endnotes
- Yankelovich, D. Coming to Public Judgment: Making Democracy Work
in a Complex World. Syracuse, New York: Syracuse University Press,
1991.
- Sclove, R.E. Democracy and Technology New York: Guilford Publications,
Inc., 1995.
- Sapp, Gregg. "Science at the Ethical Frontier," Library Journal,
March 1, 1994, p. 52.
- Allen, A. "Gene Machine: Can Anyone Control the Human Genome Project?"
Lingua Franca, March, 1997, p. 33.
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