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The ‘Spring of Bioethics’ in China

The ‘Spring of Bioethics’ in China. Emerging Bioethical Orders and New Spaces of Participation. Orders and Disorders. Outline Presentation. Under Construction! Deconstruction?. ‘Spring of Bioethics’ in China:

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The ‘Spring of Bioethics’ in China

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  1. The ‘Spring of Bioethics’ in China Emerging Bioethical Orders and New Spaces of Participation

  2. Orders and Disorders

  3. Outline Presentation Under Construction! Deconstruction?

  4. ‘Spring of Bioethics’ in China: New Possibilities and Modalities of Participation Limits and Dangers Fercap Health NGOs Context - Emerging Bioethical Orders Pro-Democracy Demonstration Hong Kong October 1 2009

  5. Stem Cell Therapy or Snake Oil? “Desperate patients traveling abroad for dubious stem cell treatments. Monya Baker investigates the damage not only to human lives but also to reputable stem cell research.” Source: Nature Biotechnology, Vol. 23, No. 12, Dec. 2005 Author: Monya Baker Patients warned about unproven spinal surgery “Pressure is mounting on a Beijing neurosurgeon to prove that his popular treatment for spinal-cord injury works. In an article published last month, a group of spinal experts concludes that the treatment, which involves implanting fetal cells into the spine to promote nerve-cell regeneration, has significant side effects and does not provide any benefit.” Source: Nature, Vol 440, 13 April 2006 Author: Cyranoski, D. (2006) Case - Commercialized Forms of Experimental Stem CellTherapies ContrastingVoices 1 - International Science Journalism

  6. Contrasting Voices 2: The Insider’s View • “There are many, many problems with stem cell therapies in China. There is no nation-wide [set of] standards that regulates clinical experiments and clinical trials. […] You know there are many small, private hospitals, owned by a… a boss, who wants to earn money. They will advertise on the television and the radio and many patients will be attracted. They provide several therapies, you know, “therapies”, against cancer, and several other chronic diseases. […]. There are many lost patients in China, because… [long break] the situation is very chaotic [乱 luan], and there are no regulations yet.” • [Dr Wang – stem cell researcher involved in clinical trial in Beijing] • Case of Clinic in Henan Province – clear case of patient deception, amount of stem cells injected too low for therapeutic success • It becomes clear that stem cell tourism is only the top of the iceberg, the majority of patients in estimated 150 clinics are patients from China (source: http://www.nature.com/nature/journal/v440/n7087/full/440992b.html)

  7. Support by Local MOH Bureas

  8. Support by Local MOH Bureaus

  9. ContrastingVoices 3: Enthusiast and Uncritical Media • Title:干细胞移植治疗糖尿病西部首个成功案例出院、 • “First case of successful treatment of a diabetes patient by Stem Cell Transplantation Treatment in Western China” • 2009-06-18 • 来源: 重庆晨报 (Source: Zhong-Qing Morning News) • 作者：何薇 (Author: He Wei)

  10. 干细胞治疗是否已能用于临床? 记者的问题: “一位比脑瘫程度要轻的智力发育迟缓的孩子能否进行干细胞治疗?” 医院长院回答: “这种情况我们能治。一般通过干细胞静脉注射或腰椎穿刺的方法就可以。腰椎穿刺效果会快一些，治疗3~4次就能看到效果”. 该院崔院长非常肯定地说。 来源：北京青年报 (07/08/13 00:37) “Should Stem Cell Treatments already be used in Clinical Therapies?” Question of Reporter: Can a child that as a result of a light form of brain paralysis (脑瘫) suffers from intelligence and learning retardation receive stem cell treatment? Reply of Hospital Manager Cui: ‘This kind of condition we can cure. In general the carrying out of intravenous (?) stem cell injections or the method of lumbar vertebra puncture are possible. The results of lumbar vertebra puncture are a little but faster, with 3-4 treatment rounds it is thus possible to see results’. This is what hospital manager Cui said with extraordinary firmness. Now the journalist opposes this statement with expert views and he answers his introductory question negative Source: Beijing Youth Newspaper, August 13, 2007 ContrastingVoices 4 – Critical Media

  11. Contrasting Voices - Bioethical Plurality An International View - BIONET “We must protect desperate patients from themselves” (Genevra Richardson, BIONET Conference London) “Treatments that are at an experimental stage should be planned as clinical studies, and rigorous, scientific and ethical review should be sought” (BIONET Workshop Report 4)

  12. Contrasting Voices - Bioethical PluralismNational-Level Perspective 1 • 她强调，所有干细胞的研究，在临床应用之前一定要经过临床试验，不能从实验室就直接进入常规的临床治疗。 • All forms of stem cell research, before they are used in the clinics, must certainly undergo clinical trials. You can not directly move from the laboratory to the routines of clinical application. (Zhai Xiao-Mei, Beijing Union medical Hospital) • Source:财经网 Caijing Net, April 4 2009

  13. Contrasting Voices - Bioethical PluralismNational-Level Perspective 2 • Many patients ask for these treatments and indicate benefits and satisfaction afterwards. So why stop these treatments completely? • In case of continuation a necessary precondition would be however: • Fully informed consent on: • clinical risks • Uncertainty on Treatment Efficacy (paraphrased opinion frequently encountered in conversations with bioethicists in China)

  14. ContrastingVoices 5 - Critical Scientists • Huge Number of Scientists are highly critical with regard to unproven stem cell treatments and they ask for consistent regulations, not only for the control of commercial stem cell treatments but also for systematized clinical Trials • Various ways of engagement exist • Through professional organizations such as the Chinese Society of Stem Cell Engineering • Through informal contacts with administrators in the MOH and MOST • Through invited Participation in MOH/MOST related committees and expert groups

  15. Valid since May 1 Addresses all forms of experimental therapies Implementation procedures foresee: registration (before December 1 this year) Subsequent evaluation through visiting expert commissions who work along clearly specified and nationally binding criteria Predefined forms of punishment and sanction Precise strategies and criteria are in the process of being worked out these days New Regulation

  16. Gradually emerging participatory sphere of politics in China Increasing transparency, possibility of criticism and feedback Institutionalized Bioethics in China operate closely within existing political structures Criticism is possible, but only along accepted and predefined lines Civic Engagement – non-government related – remain undesired, operate under danger Not only Bioethics Activism but Science Activism (this point remained underexplored) Role of Internet Activism beyond Bioethics and Science The Internet Emerging Patient Organizations Conclusion

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