Stem cell treatments in china: Rethinking the patient role in the global bio-economy

Bioethics

Volumn 27, Issue 4, 2013, Pages 194-207

  Chen, Haidan ^a   Gottweis, Herbert ^b  

^a ZHEJIANG UNIVERSITY   (China)

^b UNIVERSITY OF VIENNA   (Austria)

Author keywords

China; Ethics of stem cell research; Patients; Stem cell tourism; Translational medicine

Indexed keywords

ARTICLE; CHINA; ECONOMICS; ETHICS; HUMAN; HUMAN EXPERIMENT; MEDICAL TOURISM; METHODOLOGY; PATIENT SATISFACTION; STANDARD; STEM CELL; STEM CELL TRANSPLANTATION;

CHINA; HUMAN EXPERIMENTATION; HUMANS; MEDICAL TOURISM; PATIENT SATISFACTION; RESEARCH DESIGN; STEM CELL TRANSPLANTATION; STEM CELLS;

EID: 84876846702     PISSN: 02699702     EISSN: 14678519     Source Type: Journal    
DOI: 10.1111/j.1467-8519.2011.01929.x     Document Type: Article

References (69)

1. We use capital letters to avoid using the patients' real names.
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42. However, it's not clear to us what standards it applies.
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47. ONH: optic nerve hypoplasia, an underdevelopment of the optic nerve that impairs vision and can be accompanied by brain and hormonal problems; SOD: Septo-optic dysplasia, a congenital malformation syndrome made manifest by hypoplasia (underdevelopment) of the optic nerve and absence of the septum pellucidum (a midline part of the brain).
48. QQ is the most used online communication tool in China.
49. All of the blogs that we have observed are open access for everybody.
50. Facebook is the social network where foreign patients do most of their communications.
51. In the email interviews, first of all, we introduced ourselves and our research project. We informed the patients that we were going to write something for the UK-based journals Bioethics, however, we would very much like to document concrete experiences as a basis for our paper. We told the patients that we noticed from the internet that they had tried stem cell treatments and asked them if, provided it was not too inconvenient for them, they would briefly answer some questions.
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53. They are company employees, including scientific researchers and medical doctors.
54. According to the website of Beike Europe, 6 stem cell injections cost 22000-28000 EUR, depending on the disease, the protocol used and the hospital.
55. This information was introduced on the Beike Europe website, accessed 14 April 2010.
56. These conditions include: ataxia (10), ALS (3), brain injury (2), cerebral palsy (3), encephalatropy (1), Guillain-Barre syndrome (1), multiple sclerosis (4), optic nerve hypoplasia (2), spinal cord injuries (5), spinal muscular atrophy (1), infant stroke (2).
57. This website provides all sorts of stem cell treatment information in China.
58. Among them blogs of 38 patients with cerebral palsy (CP), 37 patients with optic nerve hypoplasia (ONH), 21 patients with spinal cord injury (SCI), 21 patients with septo-optic dysplasia (SOD), and another 99 patients with about 38 other diseases. These patients' experiences/testimonials cover 23 diseases ranging from ataxia (17) to Parkinson's disease (10) to stroke (6).
59. Available from: http://groups.yahoo.com/group/stemcellchina_onh_sod/messages/
60. We are not sure whether the fund-raising actually take place on this site.
61. Availabe from: http://stemcellschina.com/blog/
62. Availabe from: http://stemcellschina.com/blog/
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68. Chen, One of the authors, was also invited to the dinner after she interviewed the director.
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