10.6092/issn.2038-3460/17244
application/pdf
2038-3460
17244
1
en
Lorenzo Beltrame
https://creativecommons.org/licenses/by-nc-sa/2.5/
Tecnoscienza – Italian Journal of Science & Technology Studies
Charis Thompson, Good Science. The Ethical Choreography of Stem Cell Research, MIT Press, 2013
Text.Serial.Journal
https://tecnoscienza.unibo.it/
6
Book Reviews
2015-07-10
2023-06-17
2015-07-10
2023-07-31
157-160
TS
Lorenzo Beltrame
2015/07/10
10.6092/issn.2038-3460/17244
157
Institute for Advanced Studies on Science, Technology and Society, Graz, Austria
2038-3460
1
en
160
Charis Thompson, Good Science. The Ethical Choreography of Stem Cell Research, MIT Press, 2013
https://tecnoscienza.unibo.it/article/download/17244/16109
6
Book Review                                                                157
  Charis Thompson
Good Science. The Ethical Choreography of Stem Cell Research.
Cambridge (MA) & London: MIT Press, 2013, pp. 343

by Lorenzo Beltrame Institute for Advanced Studies on Science,
Technology and Society, Graz, Austria

    Stem cell research has attracted a great deal of scholarly reflection,
both in the field of Science and Technology Studies and in bioethics. This
is mainly due to the high level of public and political debate surrounding
its regulation, triggered primarily by the complex ethical issues related to
the use of the human embryo for deriving a particular kind of stem cell
(namely human embryonic stem cell – hESC). The controversy over the
legal and the ontological status of the human embryo, and its contested
usability, has represented the main ethical, political and social issue in this
field of biomedicine. Several scholars highlighted the overarching role of
the embryo question, which would have overshadowed an entire range of
concerns, problems and challenges in stem cell research and clinical ap-
plication. Although prevailing, the embryo question is not the only con-
troversial societal challenge qualifying stem cell research. Accordingly,
STS and social studies of biomedicine have explored a variety of other
challenges: quality control, clinical safety and effectiveness in therapeutic
applications; standardization and validation in biobanking practices; so-
cial justice in access, affordability of available stem cell therapies and is-
sues related to the procurement of embryos, eggs and cell lines (e.g.
health risks for egg donors, inequalities and exploitations between the
North and the South in the circuit of biomaterial supply). Therefore, the
multiplex ethical, legal, political, social and cultural issues at stake, and
their dense intertwinement with bioscientific practices and objects, make
the field of stem cell research, and its regulation as much, a paradigmatic
case of the ways in which science and society are mutually constitutive.
    Charis Thompson in this book explores these overshadowed challeng-
es in stem cell research, in order to outline what she calls “good science”
or a science that has ethics – rather than a science that is simply dealing
with ethics or constrained by ethical limits. After a decade of debates over
the status of the human embryo in research on pluripotent stem cells (i.e.
stem cells able to develop into any cell type of the organism, usually de-
rived from the inner cell mass of an embryo), there is a tacit agreement on
a fundamental disagreement on the embryo question, which turns the at-
tention to other ethical issues.
    According to Thompson, we face “the end of the beginning of human
pluripotent stem cell research”, where this research field is becoming to
be normalized and standardized and thus new bioethical topics are
emerging. It is time, then, to explore these topics and the “ethical chore-
ography” of the process of consolidation of hESC research. Exploring the
Book Reviews                                                Tecnoscienza – 6 (1)

ethical choreography means taking into account what kind of concerns
emerge and gain public, political and regulatory attention, while others
remain less visible. For attaining this goal, Charis Thompson develops an
analytical framework based on the notion of “triage”. Triage is the prac-
tice by which, in a hospital emergency department, patients waiting for
treatments are classified and prioritized according to the seriousness of
their condition and to the urgency of an intervention. Her approach aims
at exploring how and why some issues come to the fore and are largely
discussed while others are “left in the waiting room” (p. 12).
    Her second goal is offering suggestions for establishing a good science
in stem cell research. As Thompson argues, the book “takes a methodo-
logical and theoretical turn toward a more normative, policy-relevant ap-
proach to analyzing science and technology in society” (p. 9). In this
sense, she criticizes the ELSI approach (ethical, legal, and social implica-
tions) in the governance of scientific research: problems related to the
procurement of embryos and eggs for stem cell research are not implica-
tions, but preconditions. Similarly, questions arising from donation of bi-
omaterials, standardization of procedures, access to therapies or partici-
pation in the value chain of this (bio)economic sector, as well as defini-
tions of the role and rights of research subjects (as donors, patients, ani-
mal models or individual recruited for clinical trials) are part and parcel
of the research itself. Charis Thompson invites to frame the ethics sur-
rounding stem cell research into “the overall picture of health care” (p.
19) in order to better deal with ethical, social and economic issues arising
in this field of biomedicine.
    She notices that research on human pluripotent stem cells has taken
place in what she calls the “pro-curial” frame, which (a) operationalizes
the ethical problem within the procurement of biomaterials (i.e. human
embryos, eggs and derived hESC lines) and thus solutions rely on ethical-
ly acceptable ways of procurement; (b) develops curatorial protocols and
practices for managing the process of procurement; (c) deploys a pro-
cures rhetoric driving innovation and investment in this field (p. 29).
Thompson discusses how the U.S. and Californian debate on human plu-
ripotent stem cell research (the main case study of this book) has framed
ethical issues in terms of procurement. What are the acceptable bio-
materials (spare embryos leftover IVF treatments, embryos created for
research purposes, stem cells derived from somatic cell nuclear transfer,
adult stem cells, existing hESC cell lines)? And what should be the neces-
sary bureaucratic procedure for attesting and securing the acceptability of
these materials?
    The strong point of Charis Thompson’s work is that she shows how
the problem of procurement does not rotate only around the embryo
question. Problems related to donation of biomaterials, the exigencies of
disabled people, disparities in access to health care, forms of benefit shar-
ing of research outcomes, geopolitical differences in stem cell research
and clinical applications represent issues that should be not only taken
Book Review                                                               159
into account, but also addressed to establish a “good science” in this bi-
omedical field. For example, she explores and discusses the multiple is-
sues related to the donation of biomaterials (e.g. embryos and eggs for
somatic cell nuclear transfer) from the point of view of the health of
women involved. She also addresses the well-known issue of property in
donation: donated tissues enter in a value chain where donors have not a
participation in the revenues and where the return in term of access to
future therapies is not clearly defined. She discusses the problems related
to the prohibition of compensation for donating eggs: while this prohibi-
tion is thought as promoting altruism, it clashes with the parallel market
of gametes in IVF. This, in turn, may create a sort of market failure in bi-
omaterial supply, which may be solved through a flow of biomaterials
from countries with less strict rules on procurement and thus with exploi-
tation of donors from these countries.
     In addition, being this field of research supported by public funding,
the return to taxpayers in terms of social justice and equity in the access
to cure is a relevant issue, but scarcely debated and not sufficiently im-
plemented into regulations. Thompson criticises the adoption of classical
informed consent model for donation – which presupposes that the do-
nor has rights neither in defining the research trajectory nor in the sharing
of possible commercial outcomes. She, instead, claims that the emerging
personalized medicine, and the development of epigenetics, calls for a
strong and continuous interaction between donors and researcher. Thus,
privacy and confidentiality appear as untenable. Similarly, the notion of
withdrawal of consent is unfeasible in stem cell research: once stem cell
lines are generated, it is impossible to predict what kind of pathways re-
search and clinical application will take. Hence, Charis Thompson ex-
plores different consent models, where the interaction between donors
and researchers is open-ended and forms of benefit sharing are envisaged.
The author, thus, claims for a greater involvement of concerned subjects
(donors, patients, investors, etc.) in every phase of human pluripotent
stem cell research, in order to set up rules, procedures and practices an-
swering to the multiplex ethical, social, economic and health care de-
mands arising in this field of bioscientific research and future medical ap-
plications.
     Although human pluripotent stem cell research in the U.S. and Cali-
fornia is the focus of the book, another good point of Thompson’s analy-
sis is her exploration of different geopolitics of stem cell research, and her
discussion of how the internationalization of this field and the competi-
tion among nations creates hierarchies that, in turn, could generate dis-
parities and other ethical concerns. Despite the efforts of emerging inter-
national scientific organizations in the field (such as The International
Society for Stem Cell Research) to establish international rules for quality
and safety, phenomena such as that of stem cell tourism (i.e. ill people
travelling to countries in which untested stem cell therapies are available)
testify how the geopolitical pattern of stem cell research does not create a
Book Reviews                                                 Tecnoscienza – 6 (1)

horizontal international world, with a progressive standardization and
harmonization of ethics and science practices. A world vertically stratified
– not only in merely economic terms but also in access, affordability and
safety of health care outcomes – emerges from her analysis.
     Finally, in a very interesting chapter, the author addresses the issue of
substituting animal models in research with in vitro cellular models. Us-
ing stem cells to study diseases and test drugs, indeed, implies not only
the abandonment of exploiting animals or particular classes of individuals
(e.g. prisoners or poor people through the clinical trial outsourcing in de-
veloping countries), but it could better fit the expectations of personal-
ized medicine. In sum, besides the embryo question, a high variety of eth-
ical issues are at stake in stem cell research, which should be addressed by
regulations.
     In conclusion, this book is a highly valued exploration of multiplex
ethical and social issues and concerns involved in stem cell research,
which are usually scantily discussed in public and regulatory debates (alt-
hough they are not unknown in recent STS work on stem cell research).
Its normative approach is undoubtedly useful to improve public and po-
litical discussion on this field of biomedicine and scientific research and,
in general, for regulation and policy-making. However, in some cases, the
book simply lists a set of ethical and social issues to be addressed, instead
of proposing practical ways to implement them into regulations and into
research and clinical practices. Furthermore, the analytical approach
based on the notion of triage sometimes seems inadequate to produce
analyses and explanations for the different attention gained by issues and
involved groups’ interests. In the book, it is not always clear why some
issues are scantily debated and others gain prominence: Does it depend
on cultural legacies, which prioritize some topics and silence others? Or
does it rely on the power of involved actors in shaping the public and po-
litical agenda? The book, thus, seems more oriented to open a discussion
with policy-makers and actors involved in regulatory processes, rather
than scholars searching analytical frameworks for analysing and explain-
ing the socio-technical dynamics shaping the making of a techno-scientific
field.




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