Autoethnographic Reflections on a Family’s Experience with Stem Cell Therapy

As biotechnologies continue to evolve, what kind of bioethics can sustain a proper sense of boundaries? Zhaohang Lyu explores how familial ethics and consumerism shape choices surrounding stem cell therapy in the context of its commercialisation in China.

Image generated using OpenAI’s DALL-E, provided by the author.
Image generated using OpenAI’s DALL-E, provided by the author

Introduction

“Since ancient times, the human pursuit of health and longevity has been insatiable—from Qin Shi Huang (秦始皇, 259—210 BC) dispatching Xu Fu (徐福) to seek immortality in the Eastern Sea, to Emperor Yongzheng (雍正, 1678—1735) concocting elixirs, and even to this very day.”

This was a remark made during a conversation with my mother. That day, I had called her, lamenting over my struggle to finalize a topic for my thesis. I figured I needed her advice, not just as my mother, but more practically, as someone who had worked in the medical industry her entire career. She eagerly launched into a discussion about China’s rapidly evolving healthcare reform, followed by her insights into the immense market potential brought by an aging society—an argument she contextualized through historical references to ancient Chinese rulers.

“Is Grandma getting her last injection today? I mean, the stem cell therapy.”

I suddenly recalled that my mother had mentioned earlier in the week that my grandmother was scheduled for another stem cell therapy that Friday—the final one for the year. Due to my mother’s professional background, it had long become a “family project.” My relatives, particularly my grandparents, had systematically undergone repeated stem cell therapy over the years.

“Yes, she just had it done today. You can call and ask her how she feels,” my mother responded, before swiftly returning to the topic of aging demographics.

“Let’s talk about the stem cell therapy. I’ve always been curious,” I said.

Though slightly reluctant, she eventually obliged. Nonetheless, she suggested: “I don’t think you should focus on that. I’d recommend looking into the current healthcare reforms instead.”

Stem cell therapy (SCT) involves using stem cells to repair or regenerate tissues, often for anti-aging effects or chronic disease management. The year 2024 marked a pivotal moment for China’s SCT industry. In January, the National Medical Products Administration (NMPA) issued a series of regulatory documents signaling strong support for the sector (NMPA 2024). By the end of 2024, China approved its first officially recognized SCT drug, signifying the formal commercialization of SCT (NMPA 2024). The SCT industry has been thriving under favorable policies and immense market potential since then. Although SCT services have been launched only in serval pilot cities, it has gradually gained popularity as a commercial service nationwide. Yet even prior to official policies and widespread public enthusiasm, commercial SCTs had long existed as discreet consumer options, operating in a gray market that subtly disrupts traditional medical and healthcare consumption patterns (Chen 2009; Song 2010; Song 2011; Chen 2017). While SCT holds alluring therapeutic promise, its clinical efficacy—particularly for commercially available treatments—remains unproven and is still under professional evaluation (Huang and Fu 2014). Many commercial SCT services remain outside existing regulatory frameworks, operating in a legal gray zone—neither formally approved nor explicitly prohibited (Song 2011; Chen 2009).

My mother’s reluctance to engage in discussions about SCT reflected a deeply ambivalent mindset. As a consumer, she saw SCT as a source of hope; yet as an industry practitioner, she was acutely aware of its complexities and controversies. Extensive academic literature has already examined the social issues behind the commercialisation of SCT in China. Scholars have, since the early 21st century, investigated the ethical and practical dilemmas associated with the operation of unauthorised clinics and hospitals, as well as the phenomenon of transnational “stem cell tourism” (Song 2010; Song 2011). From a structural perspective, Salter (2008) and Chen (2017) have analysed SCT as part of global biopolitics, focusing on how politics manifest through governance dilemmas in national regulatory frameworks. In relation to patient and consumer narratives, Song’s (2011) ethnographic study offers vivid empirical examples. The therapeutic efficacy of commercial SCTs remains ambiguous for patients, creating a tension between actual personal experiences and the optimistic narratives promoted by service providers. On the service provision side, Chen (2009) explores how SCT has evolved into a highly personalised and flexible commercial enterprise in the absence of clear regulatory guidelines.

Against this backdrop, I draw upon my family’s experience and personal observations to craft an autoethnographic reflection on familial engagement with SCT. Through this narrative, I hope to resonate with broader audience and contribute to a more nuanced understanding of how biomedical technologies both shape and are shaped by personal and familial choices.

A Relational Market

I have long been curious about how unregulated SCT influences consumers’ choices. Despite the limitation of my samples, all participants I spoke with consistently pointed to “relationship-based sales.” In China, consumer decision-making is often driven by guanxi (关系), a concept akin to Bourdieu’s notion of social capital that emphasizes interpersonal networks and reciprocal obligations as key mechanisms for accessing resources (Bourdieu 1986). As Gold, Guthrie, and Wank (2002, 3) observe, “Conventional wisdom among Chinese and foreigners holds that in the People’s Republic of China (PRC), guanxi is absolutely essential to successfully complete any task in virtually all spheres of social life.” Guanxi plays a significant role in commercial activities, serving as a powerful mechanism through which trust and resources circulate beyond formal institutional channels. In the field of healthcare, such patterns are far from uncommon. Examples include the informal circulation of substitute medicines and folk remedies within patient support groups, as well as the discreet access to scarce pharmaceuticals through personal connections.  

Given the current policy, most of the SCT institutions in non-pilot cities operate in a gray zone. Their commercial pathways are necessarily discreet, relying on informal rather than public sales channels. Apart from a few “hospitals within hospitals” that remain semi-accessible (Song 2011), most sales operate on a word-of-mouth basis—from initial introduction to the therapy, to building trust, and even to managing potential liability in case of complications. As my uncle succinctly put it, “My trust in this technology is based on my trust in people. It is the people who vouch for it.”

However, an unsettling question emerges: when a medical practice remains outside mainstream regulation, and relational-based sales become the dominant force shaping the market, how does this affect oversight and accountability? This pattern, while facilitating access, also introduces  a troubling opacity that complicates regulatory efforts. One critical dilemma emerges here: To what extent can personal networks self-regulate? Beyond existing legal mechanisms, how can we ensure justice and fair resolutions on trust alone?

Family Decision

One evening, while browsing through old photos, I came across a video recording of my grandmother’s first SCT. It was an unexpected discovery—a snippet from a documentary I had filmed for my grandparents’ golden wedding anniversary. In the video, my grandmother displayed strong resistance to undergoing the SCT procedure. Within my family, my mother’s professional background provided credibility for SCT. When it came to decisions about my grandmother’s treatment, this influence represents a kind of familial biopower embedded in household dynamics—a mode of authority rooted in familialism and internal kinship hierarchies. When SCT appeared on the treatment menu, it was embraced by nearly every member of my family. My grandmother was the only one showed hesitation.

However, my grandmother’s SCT was not her decision. It was my uncle—the eldest son in this three-generation, five-household, sixteen-member family—who made the call. Due to my grandmother’s poor health condition, the local stem cell clinic initially refused to treat her. However, my uncle, determined to find an alternative solution, reached out to an SCT expert from a coastal city, who approved her infusion after carefully reviewing her case. In many ways, it was not just my uncle’s decision as well, but the family’s collective one. My uncle firmly believes that a strong, united, and enduring family can still provide the greatest well-being for each of its members in today’s society. He understands, deeply, the significance of the elders in a family—not only as emotional anchors, but as sources of cohesion and symbolic continuity.

I gradually came to recognise that my family somehow behaves as a patriarchal family in which authority is organised along generational and gendered lines. The elderlies in such families often function as ritual figures without actual power, but they are integral to the family narrative, indispensable to familial happiness and harmony, and central to fostering intergenerational solidarity (Fang 1989). Drawing on Foucault’s concept of biopower, which refers to the governance of life and the body through dispersed mechanisms of control and regulation (Foucault 1978), I sensed familialism not merely as an emotional or cultural bond but as a microcosm where power over health and bodily decisions is enacted. In my family, decisions about medical treatments like SCT reflect a biopolitical logic, where health and survival become matters not only of individual autonomy but of familial duty and symbolic continuity. My grandmother’s case shows how this works: although it was her body and health at stake, the decision about SCT was shaped by family authority and the belief that treatment would keep the family strong and united.

Although my grandmother initially resisted the treatment, she gradually came to accept SCT over time. On the one hand, she became aware that the authority she once held within the family was waning with age, and that her voice was gradually losing influence. On the other hand, it is undeniable that SCT, at least in the absence of adverse effects, offered her a sense of hope and the comfort of a placebo. I remember my father often said, “Your grandmother is strong—she’s lived this long for the family. At the late stage of kidney disease, living is more painful than dying.” By her bedside, I heard her complain countless times: “Everything in my body feels unbearable. Living like this—I wish I could just end it.” Whenever she said such things, I found myself at a loss. I knew deeply how difficult her life has become. For someone who has been on dialysis for more than two decades, each day and night brings swelling, fevers, and unpredictable pains. Apart from scolding my grandfather—as her way of expressing affection—most of her existence now is confined to lying in bed, listening as my grandfather plays videos for her on TikTok. Yet for me, and for our entire family, it is hard to imagine a life without her, no matter what condition she is in.

Coda

Within the evolving landscape of individualism and new ethical paradigms in China (Chong 2020), my uncle represents a transitional generation—born in the 1970s, and shaped by the waves of reform while still a believer of familialism. The emphasis on preserving familial unity and reinforcing symbolic behaviours often comes at the cost of individual agency. Ethically, this raises a profound question: under different cultural and social contexts, to what extent do life and health belong to the individual, and to what extent do they belong to the family? Against this backdrop, the future of SCT in China remains uncertain. As SCT moves further toward commercialisation and broader clinical application, it will inevitably become a site where these shifting familial values and ethical tensions play out, testing how families navigate hope, autonomy, and collective responsibility in making decisions about life and health. Yet, the core challenges of SCT are fundamentally bioethical. How might we design accountability mechanisms for emerging biotechnologies that can be applied across diverse contexts? How can we balance individual autonomy with familial obligations to ensure genuine self-determination?

This article has explored the entanglements of familial obligations and relation-based marketing, all unfolding within a highly intricate socio-economic landscape. Through this autoethnography, I have documented how SCT circulates via relationship-based sales and how familialism shapes individual medical decisions within my own family. SCT, with its promises and uncertainties, reveals how emerging biotechnologies challenge existing ethical frameworks. The case also compels us to rethink how medical decisions are shaped by individual autonomy, familial obligations, and social justice. Navigating the future of SCT in China will demand not only scientific progress but also a renewed collective commitment to ethical discernment in new medicine.

References

Bourdieu, Pierre. 1986. “The Forms of Capital.” In Handbook of Theory and Research for the Sociology of Education, edited by John G. Richardson, 241–258. New York: Greenwood. Chen, H. 2009. “Stem Cell Governance in China: From Bench to Bedside?” New Genetics and Society 28 (3): 267–282.

Chen, H. 2017. “Reflection on the Governance of Clinical Stem Cell Research and Applications in China.” Regenerative Medicine 12 (6): 593–597.

Chong, Kimberly. 2020. “Cosmopolitanism and the Global Economy: Notes from China’s Knowledge Factories.” Journal of the Royal Anthropological Institute 26 (4): 805–823.

Fang, Yuan. 1989. “The Status and Role of the Elderly in Chinese Families and Society.” Chinese Sociology & Anthropology 22 (1): 86–99.

Foucault, Michel. 1978. The History of Sexuality, Volume 1: An Introduction. New York: Pantheon Books.

Gold, Thomas, Doug Guthrie, and David Wank. 2002. “An Introduction to the Study of Guanxi.” In Social Connections in China: Institutions, Culture, and the Changing Nature of Guanxi, edited by Thomas Gold, Doug Guthrie, and David Wank, 3–20. Cambridge: Cambridge University Press.

Huang, Sha, and Xiaobing Fu. 2014. “Stem Cell Therapies and Regenerative Medicine in China.” Science China Life Sciences 57: 157–161.

National Medical Products Administration (NMPA). 2024. “Conditional Approval of Amymaitosai Injection for Market Release.” Accessed January 30, 2025. https://www.nmpa.gov.cn.

National Medical Products Administration (NMPA). 2024. “Notice on the Release of the Guidelines for Mesenchymal Stem Cell Therapy in Treating Graft-versus-Host Disease (No. 7).” Accessed January 30, 2025. https://www.ccfdie.org.

National Medical Products Administration (NMPA). 2024. “Notice on the Release of the Guidelines for Non-Clinical Research on Human Stem Cell Products (No. 6).” Accessed January 30, 2025. https://www.ccfdie.org.

Salter, Brian. 2008. “Governing Stem Cell Science in China and India: Emerging Economies and the Global Politics of Innovation.” New Genetics and Society 27 (2): 145–159.

Song, Priscilla. 2010. “Biotech Pilgrims and the Transnational Quest for Stem Cell Cures.” Medical Anthropology 29 (4): 384–402.

Song, Priscilla. 2011. “The Proliferation of Stem Cell Therapies in Post-Mao China: Problematizing Ethical Regulation.” New Genetics and Society 30 (2): 141–153.

Song, Xiying. 2023. “A ‘Rich People’s Disease’: Migrant Workers and Structural Disability in China.” Medical Anthropology 42 (3): 264–277.

About the Author

Zhaohang Lyu is a postgraduate student in the PPE of Health programme at University College London. His research interests include medical ethics, medical anthropology, and contemporary Chinese literature. His current research focuses on physician behaviour under healthcare policy reforms. He is also a fiction writer, particularly interested in exploring social reflections from a postmodern approach.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.