Biomedical Odysseys—Fetal Cell Experiments from Cyberspace to China by Priscilla Song (2017)
- 1. What is the text about – empirically?
1.1 What phenomenon is drawn out in the text? A social process; a cultural and political-economic shift; a cultural “infrastructure;” an emergent assemblage of science-culture-technology-economics?
- This book discusses how online communication techniques and health care reform in post-marketization China enable people over 80 countries with irreversible brain or spinal cord injury to seek fetal cell transplant treatment in Beijing.
1.2 Where is this phenomenon located – in a neighborhood, in a country, in “Western Culture,” in a globalizing economy?
- The phenomenon happens globally (transnational flow of knowledge related to stem cell) as well as in digital space.
1.3 What historical trajectory is the phenomenon situated within? What, in the chronology provided or implied, is emphasized -- the role of political or economic forces, the role of certain individuals or social groups? What does the chronology leave out or discount?
- The phenomenon is situated against the background of a Post-socialist China and global capitalism. Following China’s economic reform started in 1970s, private clinics mushroomed in the 1990s. Cutting edge experimental treatment found more room for practice in China since there is less regulatory scrutiny compared with U.S./Europe medical institutions. In the meanwhile, the advent of internet enables online forum to flourish that facilitated patients over the world to communicate about their experiences of experimental treatment in China.
1.4 What scale(s) are focused on -- nano (i.e. the level of language), micro, meso, macro? What empirical material is developed at each scale?
- Nano—global patients seek experimental stem cell treatment in a foreign country; Chinese neurosurgeons consider themselves as pioneers leading healthcare reform and stem cell research progress
- Micro—communication; global flow of knowledge related to fetus cell
- Meso: private clinics; stem cell research academic institutions; online archive, blogs, chatting room, email correspondence
- Macro: laws and economies underpinning experimental medical entrepreneurship in China
1.5 Who are the players in the text and what are their relations? Does the text trace how these relations have changed across time – because of new technologies, for example?
- Patients and their relatives, stem cell treatment staffs (doctors, nurses, administrative staffs). Online forum created a space that allows people with similar needs to communicate with each other, therefore the traditional doctor-patient relation is unsettled.
1.6 What is the temporal frame in which players play? In the wake of a particular policy, disaster or other significant “event?” In the general climate of the Reagan era, or of “after-the-Wall” globalization?
- Growing entrepreneurship in Post-marketization China; global capitalism; flourishing of online forums
1.7 What cultures and social structures are in play in the text?
- Entrepreneurship and patriotism in post-socialism china
- Institutions regulating/underpinning stem cell treatment, online forum that facilitate patients’ travel overseas
1.8 What kinds of practices are described in the text? Are players shown to be embedded in structural contradictions or double-binds?
- In pursuing regenerative therapies abroad, patients actively circumvented the regulatory restrictions and ethical concerns. Hope overcomes uncertainty and distrust that eventually pushes them to seek treatment in China
1.9 How are science and technology implicated in the phenomenon described?
- The text discusses extensively about transnational flow neuro-regenerative knowledge and how digital communication techniques creates biomedical subjectivity
1.10 What structural conditions– technological, legal and legislative, political, cultural – are highlighted, and how are they shown to have shaped the phenomenon described in this text?
- The book addresses how online discussion forums and blogs have transformed patient activism in a transnational era. The second part of the book “Chinese Experiments" elaborates on the political economy underpinning (post)socialist health care. Privatization of health care increases risk as well as profit, making china a laboratory site for experimental medicine.
1.11 How – at different scales, in different ways – is power shown to operate? Is there evidence of power operating through language, “discipline,” social hierarchies, bureaucratic function, economics, etc?
- Expertise of neuroscience is challenged as emerging online discussion forums and blogs offer site for sharing knowledge and experiences of experimental surgery
1.12 Does the text provide comparative or systems level perspectives? In other words, is the particular phenomenon described in this text situated in relation to similar phenomenon in other settings? Is this particular phenomenon situated within global structures and processes?
- Yes. The text compared stem cell regulatory apparatuses and clinical practices in China and in U.S./Western Europe.
2. What is the text about – conceptually?
2.1 Is the goal to verify, challenge or extend prior theoretical claims?
- The text challenges dichotomous understanding of East versus West, good science versus bad science; complicates legality and morality of stem cell treatment. The book also extends on theories accounting for “biosociality” by examining the role of internet in shaping patient’s subjectivity.
2.2 What is the main conceptual argumentor theoretical claim of the text? Is it performed, rendered explicit or both?
- Internet is not only a site for information but also shapes patient’s subjectivity. The cyberspace is critical in creating Foucauldian biomedical subjectivity.
2.3 What ancillary concepts are developed to articulate the conceptual argument?
- “Cutting edge”: experimental surgical intervention that inhabit the border between legal and illegal, ethical and unethical;
- Temporal dimensions of hope
2.4 How is empirical material used to support or build the conceptual argument?
- Use online forum archive and ongoing discussion streams to engage with the concept “hope”.
2.5 How robust is the main conceptual argument of the text? On what grounds could it be challenged?
- The conceptual argument is robust in light of the empirical evidences used. It would be more convincing if the author could probe more around the liminal line between “hope for cure” and “fear of death”.
2.6 How could the empirical material provided support conceptual arguments other than those built in the text?
- The online discussion forum could also support argument on performance and self-realization.
3. Modes of inquiry?
3.1 What theoretical edifice provides the (perhaps haunting – i.e. non-explicit) backdrop to the text?
- By framing hope as an important affect organizing human engagements with “cutting edge” medicine, the author demonstrates how the production of hope is entangled in differences in ethical values, regulatory frameworks, and politico-economic histories that motivate border-crossing quests for regenerative medicine.
3.2 What assumptions appear to have shaped the inquiry? Does the author assume that individuals are rational actors, for example, or assume that the unconscious is a force to be dealt with? Does the author assume that the “goal” of society is (functional) stability? Does the author assume that what is most interesting occurs with regularity, or is she interested in the incidental and deviant?
- Hope for recovery from irreversible disease prompt “irrational’ quest for unfounded fetal cell treatment in China , or “odyssey” as the author put it. The author gives a thorough account for both successful and fatal results.
3.3 What kinds of data (ethnographic, experimental, statistical, etc.) are used in the text, and how were they obtained?
- Participant Observation ; Interview; Survey; Daily conversation; Archived online platform discussion; Textual analysis of medical and scientific documents.
3.4 If interviews were conducted, what kinds of questions were asked? What does the author seem to have learned from the interviews?
- Patients’ experiences of treatment back home and in China
- Neurosurgeon and entrepreneur’s tactics in sustaining the business and avoiding government regulation
- The author learned from the interview that dichotomous understanding of science such as “better” or “worse” practices is not tenable.
3.5 How was the data analyzed? If this is not explicit, what can be inferred?
- The author compares online archived posts with real experiences
3.6 How are people, objects or ideas aggregated into groups or categories?
- Categorized into care giver and recipients; East and West; Different language users; different professionals such as Chinese neurosurgeons, nurses, scientists, and administrative staffs.
3.7 What additional data would strengthen the text?
- Experiences of patients from non-western countries—is there any Chinese patients who underwent the same treatment procedure? Is there any online forum in China that helps people to communicate each other’s experiences?
4 Structure and performance?
4.1 What is in the introduction? Does the introduction turn around unanswered questions -- in other words, are we told how this text embodies a research project?
- The introduction chapter weaves research background with a historical account of stem cell research development, regulation of stem cell research in different countries, and scholarly debate on the relation between internet and people, as the text smoothly transitions into the research project.
4.2 Where is theory in the text? Is the theoretical backdrop to the text explained, or assumed to be understood?
- The theory is elaborated in chapters introducing historical development of stem cell treatment and china’s marketization.
4.3 What is the structure of the discourse in the text? What binaries recur in the text, or are conspicuously avoided?
- Internet as a mediating apparatus that shapes biomedical subjectivity. The text avoids using terms such as West or East, remaking the boundaries between public and private, legal and illegal, ethical and unethical.
4.4 How is the historical trajectory delineated? Is there explicit chronological development?
- The author discusses china’s medical reform and the launching of experimental clinic following marketization and economic development in 1990s.
4.5 How is the temporal context provided or evoked in the text?
- From history to present development in stem cell research and practice
4.6 How does the text specify the cultures and social structures in play in the text?
- Weaves in the book structure—part two introduced background of china’s emergent entrepreneurship, eagerness for science breakthrough in neurodegenerative research, and cross-cultural encounter between foreigner patients and Chinese doctors and caregivers
4.7 How are informant perspectives dealt with and integrated?
- Informants ‘online discussion were quote verbatim. The author wants to represent internet’s mediating role faithfully.
4.8 How does the text draw out the implications of science and technology? At what level of detail are scientific and technological practices described?
- The text details the conjunction of Internet-based communication technologies and market-driven experimental medical treatment. The author traces daily experiences of patents from initial searching for treatment phase to the post-surgery phase.
4.9 How does the text provide in-depth detail – hopefully without losing readers?
- Include images, blogs and discussion threads written by the patients
4.10 What is the layout of the text? How does it move, from first page to last? Does it ask for other ways of reading? Does the layout perform an argument?
- The layout suggests reading in a linear manner, from the patients searching online for alternative treatment to their encounter with Chinese neurosurgeons.
4.11 What kinds of visuals are used, and to what effect?
- Travel route of patients from US/Europe to China which suggests transnational flow of people/knowledge
4.12 What kind of material and analysis are in the footnotes?
- Translation between English and Chinese expressions
- Links to online archive/blog source
4.13 How is the criticism of the text performed? If through overt argumentation, who is the “opposition”?
- The text criticizes patronizing view that renders stem cell experiment in china as charlatan or scientifically untenable.
4.14 How does the text situate itself? In other words, how is reflexivity addressed, or not?
- The author reflects on ethnographer’s role doing research in digital platform: how to credit the authors of online discussion stream? How to protect their identities without losing academic integrity?
5.1 Who is the text written for? How are arguments and evidence in the text shaped to address particular audiences?
- Scholars in medical humanity and STS. The evidence supports the author’s argument on internet’s mediating role in shaping sociality and medical care.
5.2 What all audiences can you imagine for the text, given its empirical and conceptual scope?
- fetal cell treatment recipients and their families; people interested in experimental clinic treatment in China. The arguments and evidence are presented in a way that engages readers even from non-academic background.
5.3 What new knowledge does this text put into circulation? What does this text have to say that otherwise is not obvious?
- Production of biomedicine knowledge is unlimited to doctor-patients dyad relation. This text formulates the importance of online forum in creating a community for sharing experiences and facilitates transnational flow in seeking of cutting-edge treatment and care
5.4 How generalizable is the main argument? How does this text lay the groundwork for further research?
- The argument is generalizable in the sense that is facilitates understanding the intersecting political economy, ethics and digital space in shaping experimental therapeutic means. Further research in stem cell and fetal cell treatment can benefit from this book’s insight.
5.5 What kind of “action” is suggested by the main argument of the text?
- Reflection on the dichotomous understanding of West versus East science. Science can be viewed as transnational knowledge in practice.
- Enrich understanding of relations between people and the internet
6. Other modes of expression?
Describe how the material and arguments of this text could be presented in a form other than that of a conventional scholarly book -- as a graphic novel, museum exhibit, activist stunt, or educational module for kids, for example?
- Can present its findings in the medical research institutions using the evidence collected from online forum; can also show the online correspondence streams as animations to deepen understanding of a patient’s journey in seeking cure.