Toward a Governance Structure Beyond Informed Consent: A Critical Analysis of the Popularity of Private Cord Blood Banking in Taiwan

Abstract

In fewer than 10 years, umbilical cord blood has transformed from a medical waste to a lifesaving treasure that parents in Taiwan are willing to store at great expense. As a blooming industry with yearly revenues of 600-700 million NT dollars, family banks annually store the cord blood of roughly 19,000 newborns, a number that constitutes 8-10% of newborns in Taiwan each year. Yet, given the predominant role market force plays in Taiwan's cord blood banking, how does it affect people's understanding of the technology and their imagination of their individuality and relationship with one another in the future? This paper reveals how private cord blood has successfully framed the practice of cord blood banking as a form of biological insurance, thereby downplayed the uncertainties inherent in the development of science, reinforced the private nature of the cord blood stored, while impoverishing parents' understanding and imagination of an alternative biosociality where cord blood can benefit more people. Moreover, by distinguishing between private cord blood banking and medical practice, this analogy of biological insurance also co-produced a more lenient governing framework based on parents' informed consent usually suitable for consumer transaction, but unwittingly placed physicians in a more vulnerable position to guard against conflicts of interest when providing information to prospective parents and collecting cord blood during the process of delivery. Hence, by exploring the technological, social, and regulatory contexts of the popularity of Taiwan's private cord blood banking, this paper seeks to make policy suggestions beyond informed consent hoping to empower people's role both as consumers as well as biological citizens to think more critically about the technology and to govern it more adequately.

• Cord blood banking
• Biopolitics
• Scientific governance
• Bioeconomy
• Technological progressivism
• Conflicts of interests

Acknowledgment

Research of this paper is supported by the National Science Commission of Taiwan under the project “Law and Ethics of Biomedical Research in the Post-Genomic Era: Rethinking Research Subjects' Rights Toward Their Body and Tissue Samples (NSC 97-3112-H-010 -002).” I would like to thank Chia-Ling Wu for the inspiration and encouragement she generously provides all the time, Nicole S.Y. Huang, Hsiu-I Yang and the three anonymous reviewers for their invaluable comments and suggestions, the people who accepted my interviews, particularly Shawn Liu for patiently teaching me the science of cord blood banking and sharing with me his insights about the prospect of the science, and for H.Y. Tseng for her capable assistance. The errors and responsibility, however, are all mine.

Notes

1 No. 096179 Decision of Taiwan's Fair Trade Commission, 2007/12/18. The figure is based on the figure provided by the Ministry of Economic, which is equivalent to roughly 18-21 million US dollars in 2004 and matches the figures provided by the family banks themselves in the news coverage.

2 United Daily News, February 27, 2008, p. E2; Economic Daily News, January 9, 2008, p. D6.

3 Cryosave, umbilical cord blood stem cell storage should increase in Europe. Press release, September 11, 2007 available at https://www.cryo-save.com/company_news.html?id_news=76 (visited Jan 12, 2009).

4 Economic Daily News, January 9, 2008, p. D6.

5 The original data are unavailable from the National Marrow Donor Program. For more information, see Parent's Guide to Cord Blood Foundation, http://parentsguidecordblood.org/content/usa/medical/oddsofuse.shtml?navid=30 (visited May 17, 2009).

6 The actual amount is hard to be ascertained. The Association of Family Cord Blood Banks estimated that there are 750,000 units of cord blood stored in family banks in the United States. McGuckin and Forraz (2008) estimate that there are approximately 700,000 units stored in private cord blood banks worldwide, with 500,000 in the USA and just over 135,000 in Europe. In contrast, according to statistics from the NMDP and the New York Blood Center, which are the two largest public inventories of cord blood units in the USA, there are only 110,000 units stored in public banks. Likewise, McGuckin & Forraz's study indicated that there were 276,000 cord blood units stored in approximately 34 public cord blood banks in about 20 countries (McGuckin and Forraz 2008).

7 In 1996, The New York Blood Center Placental Blood Program charged US$15,300, the US National Marrow Donor Program charged US$21,500, and the average of 15 European national marrow donor registries was US$14,175. The price rose substantially afterward. In 2002, the average price was US $32,256. See http://parentsguidecordblood.org/content/usa/medical/oddsofuse.shtml?navid=30 (visited May 27, 2009).

8 The eight companies are Baby Banks (訊聯), Health Banks (生寶), Stemcyte (美商永生), Sino Cell (再生緣), Alarvita (大展), Discovery (尖端), and two other banks—Chi-Fu (祈福) and Hong-Yeh (宏燁)—whose official English names are unavailable on the web.

9 The Epoch Times, March 25, 2006, available at http://www.epochtimes.com/b5/6/3/25/n1265949.htm (visited May 17, 2009).

10 Table 24, Birth Rate of Major Countries, International Statistics compiled by Ministry of Interior, available at http://sowf.moi.gov.tw/stat/national/j024.xls (visited Nov 25, 2009).

11 Directorate General of Budget, Accounting and Statistics, Executive Yuan of the Republic of China, Index of Income and Expenditure, Annual Report of Social Index Statistic 2008, available at http://eng.stat.gov.tw/public/data/dgbas03/bs2/socialindicator/2007/table_income.xls (visited Nov 25, 2009).

12 This includes the Buddist Tzi Chi Stem Cells Center (慈濟), the Taiwan Blood Services Foundation (台灣血液基金會), the cord blood bank set up by the Koo Foundation's Sun Yat-Sen Cancer Center (辜公亮和信治癌中心醫院), and the VIA Cord Blood Stem Foundation (信望愛基金會).

13 Taiwan Genomic Survey, No. 20, August 4, 2005 available at http://srda.sinica.edu.tw/webpages/gene/020.htm (3 of 3) [visited Dec 30, 2008]. This is regular survey that randomly selected samples people who are at least 18 in Taiwan. This particular survey on cord blood was conducted in April 2004 and had 1,632 participants.

14 Id. The fee for storage was set at 10,000 NT dollars per year.

15 http://www.babybanks.com.tw/SC/stemcell/cell_1_1_2.asp (2 of 4) [visited Dec 4, 2008].

16 http://www.healthbanks.com.tw/faq4-2.asp?no=50&Uno=42 [visited Jan 6, 2009].

17 Economic Daily, July 23, 2008, p. B4.

18 Hui-Ling Huang, Should I Store My Baby's Cord Blood? Common Health Magazine (康健雜誌), vol.114 (2008) available at http://www.commonhealth.com.tw/article/index.jsp?page=1&id=4449 (visited July 16, 2009).

19 Department of Health, No. 0910013376, January 18, 2002, Department of Health Gazette, vol. 31:11, pp. 26-35.

20 No. 0960051571, promulgated by the Department of Health, November 28, 2007.

21 Clause 2 of the Model Contract for Umbilical Cord Blood Storage, issued by the Department of Health, Yi Tzi Regulation No. 0960051571, November 28, 2007.

22 No. 096122, issued by the Fair Trade Commission, July 8, 2007; No. 096179, issued by the Fair Trade Commission, December 18, 2007.

23 No. 097112, issued by the Fair Trade Commission, August 21, 2009; No. 097111, issued by the Fair Trade Commission, August 21, 2008.

24 Contract on file with the author.

25 Contract on file with the author.

26 Epochtimes, 2006/6/7 available at http://www.epochtimes.com/b5/6/6/7/n1341918.htm (visited Nov 27, 2009).

27 Liberty Times 2008/6/11; Liberty Times 2006/3/6; United Daily News, Sep 18, 2007.

28 Liberty Times, 2005/6/20; Liberty Times, Dec 9, 2006.

29 China Times, May 27, 2006, p. A6.

30 Liberty Times, May 27, 2006.

31 Interview with Chin-Li Lin (林錦麗), Director of the Sixth Division, Department of Medical Affairs, covered in Hui-Ling Huang, Should I Store My Baby's Cord Blood? Common Health Magazine (康健雜誌), vol. 114 (2008), available at http://www.commonhealth.com.tw/article/index.jsp?page=1&id=4449 (visited July 16, 2009). See also interview with Hsueh-Jui Yuan (薛瑞元), Director of the Department of Medical Affairs, covered in Global Vision Magazine (遠見雜誌), August 2005, available at http://www.gvm.com.tw/Board/content.aspx?go=cover&ser=11187 (visited Nov 27, 2009).

32 For the procedure of delivery, Taiwan's National Health Insurance in 2009 began a case-payment system, which pays a lump sum of 36,335 points for the total cost of both vaginal birth and Caesarian section. The foregoing “8,902 points” refers to the compensation received by obstetricians for their work in these procedures. But hospitals withhold part of the compensation before doling out the remainder to the given obstetrician depending on the contract between the obstetrician and his or her hospital.

33 http://www.healthbanks.com.tw/faq2-3-2P.asp?no=192&Uno=1 (visited Jan 1, 2009); http://www.stemcyte.com.tw/news_detail.aspx?pid=P_00000027 (3 of 3) (visited Jan 16, 2009).

34 http://www.babybanks.com.tw/02_service/2_1a.html (2 of 2) (visited Jan 6, 2009).