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Configurations, Volume 16, Number 1, Winter 2008, pp. 117-135 (Article)
DOI: 10.1353/con.0.0042
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Moral Agendas for Genomics:
How to Find the Blind Spots?
Cor van der Weele
Wageningen University and Research Centre
Abstract
In evaluating patterns of attention, the hard part is to identify
blind spots. This essay focuses on the moral agenda for genomics,
arguing that this agenda is framed differently through different
metaphors on the relation between science and society. It is argued
that moral agendas on genomics are dominated by the ELSI (Ethical,
Legal and Social Implications) frame, that a global ethics framing
deserves more prominence, and that the frames need one another
for the identification of blind spots.
Inventories of Moral Agendas
What are ethicists paying attention to in connection with genomics
—in other words, what do their moral agendas look like? This ques-
tion is receiving increasing attention, and rightly so, because after a
few decades of ethical interest and research in genetics and genom-
ics, patterns of moral emphasis have formed and evolved, so that it
becomes possible to reflect on them. This reflection has great moral
significance, at least potentially, since the patterns of attention them-
selves, including the hypes and blind spots, are morally significant.
In looking for these patterns, it is inherently easier to identify what
is present than what is absent. Making inventories will reveal the is-
sues that receive attention (though their categorization may be con-
troversial) but will tend to overlook neglected issues, because what is
not attended to in research will not show up in an inventory of that
Configurations, 2008, 16:117–135 © 2009 by The Johns Hopkins
University Press and the Society for Literature and Science.
117
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Configurations
research. Revealing the unattended requires some background idea
about what a “complete” moral agenda would look like—or at the
very least, a preconceived idea of issues that need to be addressed. In
short, it requires a normative perspective on agendas.
The identification of patterns of attention, with an emphasis on
blind spots, is the central topic of this essay. I will start with some
recent inventories of research, and from there argue that the pat-
terns in the moral agendas for genomics are more systematic than
the inventories suggest. I distinguish three coherent alternatives. A
more detailed look at their metaphorical framing will help to un-
derstand their differences as well as their respective strengths and
weaknesses.
My own normative position will have two levels. At the first, of
moral agendas on genomics, I will argue that a global-justice per-
spective needs strengthening as an agenda-setting frame for genom-
ics. The second level pertains to patterns of attention, with an em-
phasis on the search and correction of blind spots, as an important
issue of moral inquiry in its own right. At this level, the existence
of a plurality of frames should be cherished, since the frames are
normative outlooks that can identify blind spots in one anothers’
agendas.
1
I start with two recent inventories of moral agendas for genomics,
a starting point that is meant to be illustrative, not exhaustive. Both
inventories address the field that is called ELSI in the United States,
ELSA in Europe, and GE
3
LS in Canada—that is to say, Ethical, Legal
and Social
Implications
in the United States and
Aspects
in Europe,
while the two additional Canadian “Es” stand for
Economic
and
Environmental
(the “G” is for
Genomics).
I will describe the emerg-
ing patterns in Arno Wouters’s inventory of Dutch ELSA research
in 2005
2
and the American/Canadian ELSI/GE
3
LS review of human
genomics by Avard and her co-authors in 2006.
3
When the context
is unspecified, I will use the ELSI label to stand for ELSA and GE
3
LS
as well, neglecting the differences between them.
1. I see such plurality as an important characteristic of a
lingua democratica.
The re-
search program “Towards a
lingua democratica
for public debate on genomics,” of which
I am a member, aims to characterize interaction-prone ways to use language in public
debate. It is subsidized by the Netherlands Organization for Scientific Research
(NWO).
2. Arno Wouters,
ELSA Onderzoek in Nederland
(Nijmegen: Centre for Society and Ge-
nomics, 2005).
3. D. Avard, L. M. Bucci, B. Coly, and A. Saginur,
Review of Research in Canada and the
United States and Synthesis of Key Informants Views
(Montreal: ERA-SAGE Research Area
on Ethical, Legal, and Social Aspects of Human Genomics, 2006).
Van der Weele / Moral Agendas for Genomics
119
Wouters’s study is an inventory and analysis of ELSA-research in
the Netherlands; the analysis aims to categorize research projects
by distinguishing themes, issues, research domains, and disciplines,
and to identify possible hiatuses in research programs. Sources of in-
formation include interviews with key participants. The report pres-
ents all kinds of findings; for example, when three types of research
questions are distinguished (research on social impacts; research on
applications; research on underlying explanatory questions), about
80 percent of the 122 projects belongs to the first two categories.
The central finding, however—judging from the fact that all three
recommendations in the report address this issue—is that most
ELSA research in the Netherlands can be characterized as “micro-
research,” that is to say, that experiences of individuals and local
practices are the central objects of research and case studies.
4
Wout-
ers associates the dominance of micro-issues with the dominance of
three research disciplines in ELSA-research in the Netherlands: sci-
ence and technology studies, psychology, and ethics. The emphasis
on micro-issues implies that little attention is devoted to studies un-
dertaken from macro-perspectives, associated with macro-sociolog-
ical, -economic, and sociopolitical approaches. Wouters writes that
it is his impression that abroad, more attention is given to macro-
issues, such as the meaning of genomics for the divide between the
rich and poor.
5
The central analysis and evaluation seems to spring from Wout-
ers’s normative ideal, mentioned in passing only near the end of
his report, that research should address both levels: micro-research
should be coupled to macro-aspects, for example, by paying atten-
tion to implications for policy, or by using results of micro-studies
as an input for broader questions. In line with this main finding
and this background ideal, Wouters recommends that combinations
of micro- and macro-research should be stimulated, that macro-re-
search in itself should be stimulated, and (on the basis of the impres-
sion that the heavy focus on micro-issues is typically Dutch) that a
comparison with ELSA studies abroad should be undertaken.
6
The objective of the report of Avard and colleagues is to charac-
terize current publicly funded ELSI and GE
3
LS research on human
genomics in the United States and Canada, and to identify existing
trends, over- and underrepresented areas, and emerging trends. Con-
4. Wouters,
ELSA Onderzoek in Nederland
(above, n. 2), p. 28.
5. Ibid., p. 31.
6. Ibid., p. 32.
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cerning the inventory part, the summarized conclusion is that “the
majority of research undertaken in 2005–2006 focuses primarily on
ethical issues in genetic testing, cancer research and public consulta-
tion / engagement and communication about genetics and genom-
ics.”
7
For concerns and emerging trends, interviews with research
and opinion leaders in relevant fields were the main source. This
resulted in long lists of issues. Examples of the concerns include (the
selection is by Avard et al.) the convergence of technologies such
as nano- and biotechnology with genetics and genomics, the social
implications of genetic testing as a preventive measure, the storing
of genetic materials in biobanks, and the potential abuse of genetic
information by health professionals, insurers, and employers.
The researchers conclude that while at present there is a clear
focus on genetic testing, most respondents agreed that the future
of ELSI research is to be found in three areas: 1) educational ap-
proaches; 2) a shift from individual to population issues; and 3)
bridge-building between producers and users of research.
8
The au-
thors note, however, that on many questions and areas, research
is lacking. They formulate a paragraph full of heterogeneous open
questions
9
(without categorization or further explanation) and say
they hope these can serve as a call to action to ELSI researchers.
In both reports, the authors thus take an empirical approach to
ELSI agendas, and this applies to the inventories as well as to future
prospects; for the latter, key figures in the field are interviewed. But
although their own normative ideas or frameworks are not explic-
itly at issue, neither are they absent. Wouters mentions his norma-
tive ideal only near the end and in passing, but nevertheless bases
all his recommendations on it. Avard and her co-authors hope that
7. Avard et al.,
Review of Research
(above, n. 3), p. 15.
8. Ibid., p. 33.
9. Ibid. “This summary raises many further questions. Firstly, what are the ‘real’ emerg-
ing issues? What is the role of key informants,
3
the public, and academic leaders in es-
tablishing the direction of research? Is the GE LS community doing enough to raise
awareness about their research among policy makers, health professionals, researchers
3
and the public? Is there enough integration of GE LS research into health services and
3
policy development? Has funding of GE LS research yielded acceptable returns on in-
3
vestment, i.e., significantly enhanced
3
our understanding of GE LS issues? Has public/
private co-funding helped advance GE LS research in Canada and North America? How
can sectors such as universities, charities, professional associations, industry, and pro-
3
vincial governments contribute to future GE LS research in Canada? Can these sectors
3
work more closely to create the optimum environment for GE LS research? Finally, will
genomics play a critical role in non-medical fields such as immigration, adoption, in-
surance, schools, and the workplace? Research in these areas is lacking.”

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