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Abstract

We need an international infrastructure for the ethical, legal, and social implications of genomic research.
www.sciencemag.org SCIENCE VOL 336 11 MAY 2012 673
PolICyFORUM
Anticipating and addressing the
ethical, legal, and social implica-
tions (ELSI) of scientific develop-
ments has been a key feature of the genomic
research agenda (14). Research in genom-
ics is advancing by developing common
infrastructures and research platforms, open
access and sharing policies, and new forms
of international collaborations (512). In this
paper we outline a proposal to establish a “col-
laboratory” (13) for ELSI research to enable
it to become more coordinated, responsive to
societal needs, and better able to apply the
research knowledge it generates at the global
level. Current ELSI research is generally
nationally focused, with investigator-initiated
approaches that are not always aligned with
the developments in international genomics
research. This makes it difficult to efficiently
leverage findings that impact global prac-
tice and policy. Moreover, as translational
genomic research design challenges become
more pressing (14), ELSI research will need
to develop greater capacity to respond rapidly
to new developments. The ELSI 2.0 Initiative
is designed to catalyze international collabo-
ration in ELSI genomics and to enable those
in the field to better assess the impact and
dynamics of global genome research.
Vision
The aim of ELSI 2.0 is to accelerate the trans-
lation of ELSI research findings into prac-
tice and policy. To do this, we will build on
successful examples of international ELSI
research. To succeed, ELSI 2.0 must be
grounded in a commitment to the shared val-
ues of mutual respect, trust, and active col-
laboration. It will require the development
of new methods and frameworks for the
strategic targeting of research to overcome
current barriers to international, interdisci-
plinary research. Through ELSI 2.0, ELSI
researchers can be globally connected while
still carrying out locally sensitive research.
By enabling large-scale global collabora-
tions among a range of stakeholders, ELSI
research will become more effective, efficient
and economical, leading to development of
better local, regional, and international prac-
tice and policy.
Design and Methods: The Collaboratory
The collaborative Web-based infrastruc-
ture (see the figure) will be open to all ELSI
researchers, national and international agen-
cies, and other research “consumers,” includ-
ing the general public and advocacy groups.
It will provide ways for ELSI research to
make an impact on policy and practice. It will
be an active, generative space, distinct from
discussion boards or networks. The Collabo-
ratory will provide information on research
resources, prospective projects, and work-
spaces for online collaboration, as well as edu-
cational webinars and workshops. ELSI 2.0
will facilitate a variety of activities including
networking, rapid response, “crowd-sourc-
ing,” modeling, forecasting, and the develop-
ment of proactive strategies to coordinate and
enable international ELSI research.
It will give a sense of the terrain of the
international ELSI landscape, which will
be used to identify overlaps and similarities
that exist in different localities despite there
being different national cultures, legal sys-
tems, and policy regimes in play. Identifying
and appreciating regional differences can
strengthen our understanding of the com-
plexity of bioethics issues and provides a
basis for shared learning. For example, the
works of Phelan et al. (15) and Sankar et al.
(16) on genetic discrimination are proving
to be extremely informative in designing
a project on stigma in genomics in Africa.
By using ELSI 2.0, tracking and coordinat-
ing ELSI research will also be possible at a
global level and will accelerate the impact of
research on policy.
For an ELSI scholar in Africa, ELSI 2.0
could be a place to connect with other schol-
ars or to tap into resources not otherwise
readily available. For a U.S.-based advocacy
organization, the Collaboratory will provide
essential services to extend the reach of work
otherwise locked up in the academic litera-
ture. A funder in the European Union could
request a rapid response team to respond
to ad hoc, short-notice requests related to
emerging issues or to forecast important pol-
icy directions. A patient could become an
active participant in ELSI research or find
literature and experts on subjects such as
direct-to-consumer testing. For a scholar in
Asia looking to fund a multicountry effort,
the Collaboratory could help identify fund-
ing sources, collaborators, and workshops for
the idea. Scholars could choose to be observ-
ers or builders and creators (posing projects
for a workspace or a crowd-sourced effort)
or to motivate collaborators who would not
otherwise be accessible (clinicians, patients,
policy-makers). In this way, ELSI 2.0 will
continually build and support global ELSI
research and policy-making capacity.
The Collaboratory will stimulate creativ-
ity and communication between researchers,
diverse publics, funders, and policy-makers
in a variety of ways. It will provide a Web-
based infrastructure with the same capa-
bilities as the collective platforms used in
large-scale, international genomics science
and elsewhere and will draw on a variety of
approaches to maximize interactions, includ-
ing networking, rapid response, crowd-sourc-
ing, modeling, forecasting, and the develop-
ment of proactive strategies and compara-
tive methodologies to enable international
ELSI research in genomics. This will include
modeling exercises for the construction of
international frameworks and approaches
to issues. This effort will promote efficient
use of research efforts and resources, avoid-
ing redundancy and duplication of effort. A
ELSI 2.0 for Genomics and Society
research priorities
Jane Kaye,1* Eric M. Meslin,2 Bartha M. Knoppers,3 Eric T. Juengst,4 Mylène Deschênes,5
Anne Cambon-Thomsen,6 Donald Chalmers,7 Jantina De Vries,8 Kelly Edwards,9 Nils Hoppe,10
Alastair Kent,11 Clement Adebamowo,12 Patricia Marshall,13 Kazuto Kato14
We need an international infrastructure for
the ethical, legal and social implications of
genomic research.
*Author for correspondence. E-mail: jane.kaye@law.ox.ac.uk
1HeLEX, Department of Public Health, University of Oxford OX3 7LF, Oxford UK. 2IU Center for Bioethics, Indiana Univer-
sity, Bloomington, IN 46202, USA. 3Centre for Genomics and Policy, McGill University, Montreal H3A 1A4, Canada. 4UNC
Center for Bioethics, University of North Carolina, Chapel Hill, NC 27599, USA. 5P3G, Montreal H3V 1A2, Canada. 6UMR
1027, Inserm, Epidemiology and analyses in public health, 31000 Toulouse, France; UMR 1027, Faculté de médecine Pur-
pan, Université Paul Sabatier Toulouse, 31000 Toulouse, France. 7Faculty of Law, University of Tasmania, Hobart, Tasmania
7000, Australia. 8Faculty of Health Sciences, University of Cape Town, South Africa. 9Department of Bioethics and Humani-
ties, University of Washington, Seattle, WA 98195, USA. 10CELLS, Leibniz Universitaet, 30167 Hannover, Germany. 11Genetic
Alliance UK, London N1 3QP, UK. 12Institute of Human Virology, Garki, Abuja, Nigeria; University of Maryland School of
Medicine, Baltimore, MD 21201, USA. 13Department of Bioethics, Case Western Reserve University, Cleveland, OH 44106,
USA. 14Osaka University, Suita 565-0871, Japan.
11 MAY 2012 VOL 336 SCIENCE www.sciencemag.org
674
PolICyFORUM
clearer understanding of the international
ELSI landscape will be invaluable in inform-
ing and coordinating future research, tracking
the impact of research on policy, and continu-
ally building ELSI research and policy-mak-
ing capacity.
To be fully responsive to emerging issues,
the Collaboratory will establish an “Acceler-
ator Team” with experience and skills in the
translation and delivery of ELSI research to
different publics, patient groups, the media,
and policy-makers. It is envisaged that ELSI
2.0 could provide funding organizations with
access to reliable assessments of research pri-
orities to assist with the planning of research
agendas and strategy.
Together, the users of the Collaboratory
infrastructure will develop a governance
approach consistent with the vision and val-
ues of ELSI 2.0. An international steering
group will guide and support the operation
and development of the overall initiative.
A regular evaluation process with measur-
able goals and targets will used to ensure the
effectiveness and efficiency of the initiative.
ELSI 2.0 will be hosted through the P3G
Consortium, which has parallel aims and
established policies (17).
Conclusion
The success of ELSI 2.0 will be realized by
the energy, enthusiasm, and diversity of those
who join and participate. We invite all those
interested in ethical, legal, and social issues
in genomics to become involved as active
contributors. Initial pilot efforts using current
open-source tools will test proof of concept to
gauge further support and participation. Our
next step will be to have a series of meetings
to publicize and gather support for the initia-
tive and details of these meetings, which can
be found on the P3G Web site. The first meet-
ing will be held on 26 June 2012 as a satel-
lite workshop of the International Associa-
tion of Bioethics meeting in Rotterdam (18).
We shall pursue an international coordinated
funding strategy, as has been achieved for
large-scale genome science collaborations
like the International Cancer Genome Project
(7). Our initial estimates are that establish-
ment costs will be in the region of US$2 mil-
lion per year for 2 to 3 years. We believe that
ELSI 2.0 has the potential to radically trans-
form and enhance the international genom-
ics and society research agenda. In doing
so, it will be possible to better anticipate and
address the challenges raised by the global-
ization of genomic research.
References and Notes
1. F. S. Collins, N. Engl. J. Med. 341, 28 (1999).
2. E. M. Meslin, E. J. Thomson, J. T. Boyer, Kennedy Inst. Ethics
J. 7, 291 (1997).
3. E. T. Juengst, Soc. Philos. Policy 13, 63 (1996).
4. A. Wolfe, in Encyclopedia of Ethical, Legal and Policy
Issues in Biotechnology (Wiley, New York, 2003);
10.1002/0471250597.mur045.10.1002/0471250597.
mur045
5. E. Birney et al., Nature 461, 168 (2009).
6. See also ICGC as a model for international collaboration.
7. T. J. Hudson et al., Nature 464, 993 (2010).
8. W. Burke, M. J. Khoury, A. Stewart, R. L. Zimmern, Genet.
Med. 8, 451 (2006).
9. E. A. Achidi et al., Nature 456, 732 (2008).
10. P. A. Singer, A. S. Daar, Science 294, 87 (2001).
11. E. Calva, M. J. Cardosa, J. V. Gavilondo, Trends Biotechnol.
20, 368 (2002).
12. T. O. Ogundiran, Soc. Policy 1, 66 (2005).
13. W. A. Wulf, Science 261, 854 (1993).
14. E. D. Green et al., Nature 470, 204 (2011).
15. J. C. Phelan, R. Cruz-Rojas, M. Reiff, Am. J. Psychiatr.
Rehabil. 6, 159 (2002).
16. P. Sankar, M. K. Cho, P. R. Wolpe, C. Schairer, Genet. Med.
8, 33 (2006).
17. The P3G Consortium is located at McGill University,
Montreal, Canada; www.p3g.org/.
18. Online registration is now open at http://elsirotterdam.
eventbrite.com/.
Acknowledgments: We thank the Brocher Foundation and
the Wellcome Trust (097671/Z/11/Z) for their generous sup-
port for a meeting held at the Brocher Foundation 16 to 19
November 2011. In addition, the authors are supported under
the following grants: J.K., Wellcome Trust (096599/2/11/Z)
and BioSHaRE-EU (261433); E.M.M., Richard M. Fairbanks
Foundation and National Center for Research Resources, NIH
(UL1RR025761-01); B.M.K., Canada Research Chair in Law and
Medicine; Genome Canada/Quebec and BioSHaRE-EU (261433);
A.C.-T., CAGEKID (a collaboration on kidney cancer genomics)
(241669), BioSHaRE-EU (261433), Genetic European Variation
in Disease (GEUVADIS) (261123) and Genotype to Phenotype
Databases: A Holistic Approach (GEN2PHEN) (200754); D.C.,
National Health and Medical Research Council, Australia
(490037); J.d.V., Postdoctoral Fellowship from the University of
Cape Town; K.E., Center for Genomics and Healthcare Equality,
National Human Genome Research Institute (NHGRI), NIH (P50
HG3374); C.A., West African Bioethics Training Program Fogarty
International Center (FIC), NIH (R25TW007091); P.M., The Cen-
ter for Genetic Research Ethics and Law (CGREAL), a Center for
Excellence in ELSI Research, NHGRI, NIH (P50-HG-03390-07);
K.K., Ministry of Education, Culture, Sports, Science and Tech-
nology (MEXT) (221S0002), Japan.
Request
Effective Efficient
International steering group
Work space •Incubators
•Work groups
•Invitational
Individual ELSI researcher
ELSI research group
Open forums to match common interests
Resources
Webinars
Science workshops
Hotline
Funding and
priority setting
1. Issues and priorities
indentification
2. Foresight papers
3. Rapid-response teams
4. Modelling, framework
building
5. Meta-level studies
1. Team (support)
2. KT
a. Impact
b. Policy
c. Public
d. Practice
3. Coordination
4. IT
5. Funding strategy
“Collaboratory” platform
Funders and policy-makers
Economical
INCLUSIVE Rules of engagement
Leveraging
Output generator
Selected activities not
otherwise possible
Accelerator
PrivatePublic
Collaboratory scheme. Relations among the parts of the proposed Collaboratory are shown. KT, knowledge transfer; IT, information technology.
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