JAIDS Journal of Acquired Immune Deficiency Syndromes:
Letter to the Editor
Human Rights Abuses, Ethics, and the Protection of Subjects When Conducting Research on Intravenous Drug Users in China
Amon, Joseph J PhD, MSPH
Health and Human Rights Division, Human Rights Watch, New York NY
To the Editor:
In a recent issue of JAIDS: Journal of Acquired Immune Deficiency Syndromes, Liu et al report on sequence variations in TRIM5α and the association with HIV-1 resistance among 1294 intravenous drug users (IDUs) in Yunnan Province, China.1 Although the authors state that the research was approved by the Ethics Committee of Kunming Institute of Zoology, they provide no information about the recruitment of study subjects, informed consent, notification or confidentiality of HIV status, or monitoring for negative consequences to IDU from participation in the study.
Intravenous drug use is a significant cause of HIV transmission in China. In 2007, an estimated 42% of new reported HIV infections were among injection drug users.2 Although there are 1.16 million registered drug users in China,3 recent estimates suggest that there are as many as five million illicit drug users overall, the overwhelming majority heroin users.4 While expanding community-based services such as methadone therapy and needle and syringe exchange, China has also increasingly put suspected drug users in compulsory drug dependency treatment centers.5 Between 1995 and 2000, China quadrupled its capacity to administratively detain drug users in “detoxification” centers,6 of which there are now estimated to be 700,7 housing approximately 330,000 drug users.8
Since 2005, Human Rights Watch has conducted a series of investigations into access to HIV prevention and treatment for IDU in China9 as well as conditions in compulsory drug detention centers,7 including in Yunnan Province,10 the site of the research conducted by Liu et al. Our research has found that Chinese IDUs are subject to severe human rights abuse from government policies and police practices in both the community and when detained.
For example, the Chinese government provides monetary incentives to citizens for reporting suspected drug users, and the police frequently stop suspected and registered drug users, including IDUs accessing HIV testing or methadone treatment services, and subject them to urine testing and detention. Drug users frequently reported to us that they, or their families, were compelled to bribe police when detained to avoid being sent to lengthy sentences in detoxification or re-education through labor centers. We found that IDUs who are sent for compulsory treatment are not afforded due process protections such as legal representation, judicial oversight, or the right to appeal their sentence and are subject to mandatory HIV testing (without being told the result), physical and sexual abuse, forced labor, and the denial of health care, including effective, evidence-based drug dependency treatment. Suspected drug users may be detained for up to 5 years in “detoxification” and rehabilitation centers.
Other researchers have also reported on the abuse and desperation of drug users in detention centers, including the use of electric shocks while detainees viewed pictures of drug use11 and, in one study, that 9% of 3213 Chinese heroin users had swallowed glass to get a medical exemption from forced treatment.12 It is estimated that the centers have a rate of relapse of between 90 and 100%.13
These abuses violate international human rights law, including the right to freedom from torture and cruel, inhuman and degrading treatment, the right to freedom from arbitrary arrest and detention, the right to a fair trial, the right to privacy, the right to the highest attainable standard of health, and to be free from forced labor.14 Drug detention centers in China have been described simply as “forced labor camps where slavery is enforced by violent punishments or torture.”15
In July 2010 at the 18th International AIDS Conference, the Executive Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria called for the closure of all compulsory drug detention centers.16 This call has been echoed by UNAIDS (letter from UNAIDS Executive Director Michel Sidibé to Human Rights Watch, March 30, 2010), UNODC,17 UNDP,18 Unicef,19 the World Health Organization (e-mail correspondence from Director of HIV Department of WHO Gottfried Hirnschall to Human Rights Watch, May 6, 2010), and the UN High Commissioner for Human Rights.20 The UN Special Rapporteurs on Torture21 and Health22,23 have also spoken out against abuses in drug detention centers; the Director of the Drug Policy Coordination Unit of the European Commission said: “I believe that [these types of centers] are an abomination.”24
JAIDS: Journal of Acquired Immune Deficiency Syndromes requires authors to indicate whether their research is in accordance with the Helsinki Declaration of 1975, as revised in 2000.25 This Declaration emphasizes fundamental ethical principles such as informed consent and confidentiality,26 and Liu et al should specify what measures they took to ensure that these protections were respected whether their research was conducted in the community or in closed institutions.
More fundamentally, Liu et al should report on how their research on Chinese IDU, who face severe, ongoing human rights abuse, is consistent with the ethical principles of respect for persons, beneficence, and justice outlined in the Belmont Report.27 This report as well as subsequent ones28,29 proposes strict standards for research involving prisoners. Although drug use in China is an administrative and not a criminal offense, and individuals detained in compulsory drug detention centers in China have never been charged with a crime, they may fall within some definitions of “prisoners,”28 because they are forcibly detained and not free to leave at will.5 However, the absence of judicial oversight, and lack of transparency and accountability of drug detention centers, makes it difficult, if not impossible, for researchers to monitor, and respond to, potential negative consequences of research participation.
In addition, although I believe that research can be ethically conducted in prisons, I am doubtful that research in drug detention centers that does not report directly on the conditions faced by individuals in the center can be justified. Ignoring the arbitrary detention and the torture and mistreatment of individuals within the centers while reporting on basic scientific, epidemiologic, behavioral, or program evaluation research risks legitimatizing the centers as the “treatment” centers the Chinese government falsely presents them to be. Regardless of the possible ability of individuals to consent to participate in research, the first obligation of a researcher should be to appropriately investigate and characterize the setting of the research.
Liu et al should clarify where their research was conducted and the ethical protections and recruitment process used in their study. If these protections are inadequate, or if their research was conducted in compulsory drug detention centers, the Journal should withdraw the article from publication.
Joseph J. Amon, PhD, MSPH
Health and Human Rights Division, Human Rights Watch, New York, NY
1. Liu FL, Qiu YQ, Li H, Kuang YQ, et al. An HIV-1 resistance polymorphism in TRIM5α gene among Chinese intravenous drug users. J Acquir Immune Defic Syndr. 2010 Nov 23 [Epub ahead of print].
2. Wang L, Wang N, Wang L, et al. The 2007 estimates for people at risk for and living with HIV in China: progress and challenges. J Acquir Immune Defic Syndr. 2009;50:414-418.
3. Wu Z, Sullivan SG, Wang Y, et al. Evolution of China's response to HIV/AIDS. Lancet. 2007;369:679-690.
4. Reducing HIV Transmission Among and From Vulnerable Groups and Alleviating Its Impact in Seven Provinces in China, Grant No. CHN-405-G05-H. The Global Fund to Fight AIDS, Tuberculosis and Malaria, 2004. Available at: www.theglobalfund.org/grantdocuments/4CHNH_781_0_full.pdf
. Accessed February 8, 2011.
5. Cohen JE, Amon JJ. Health and human rights concerns of drug users in detention in Guangxi Province, China. PLoS Med. 2008;5:e234.
6. Reid G, Costigan G. Revisiting ‘the Hidden Epidemic': A Situation Assessment of Drug Use in Asia in the Context of HIV/AIDS. Fairfield, Australia: The Centre for Harm Reduction, The Burnet Institute; 2002.
7. Human Rights Watch. An Unbreakable Cycle: Drug Dependency Treatment, Mandatory Confinement, and HIV/AIDS in China's Guangxi Province. New York: Human Rights Watch; 2008.
8. Mathers BM, Degenhardt L, Ali H, et al. HIV prevention, treatment, and care services for people who inject drugs: a systematic review of global, regional, and national coverage. Lancet. 2010;375:1014-1028.
9. Human Rights Watch. Restrictions on AIDS Activists in China. New York: Human Rights Watch; 2005.
10. Human Rights Watch. Where Darkness Knows No Limits: Incarceration, Ill-Treatment and Forced Labor as Drug Rehabilitation in China. New York: Human Rights Watch; 2010.
11. Wolfe D. Paradoxes in antiretroviral treatment for injecting drug users: access, adherence and structural barriers in Asia and the former Soviet Union. Int J Drug Policy. 2007;18:246-254.
12. Su J. Analysis of 272 cases of swallowing foreign body in compulsory detoxification. Chinese J Drug Dependence. 2004;13:221-223.
13. Jürgens R, Csete J, Amon JJ, et al. People who use drugs, HIV, and human rights. Lancet. 2010;376:475-485.
14. Wolfe D, Cohen J. Human rights and HIV prevention, treatment, and care for people who inject drugs: key principles and research needs. J Acquir Immune Defic Syndr. 2010;1(suppl 1):S56-62.
15. Saucier R, Berlinger N, Thomson N, et al. The limits of equivalence: ethical dilemmas in providing care in drug detention centers. Int J Prison Health. 2010;6:81-87
17. Comments by UNODC Director Antonio Maria Costa at the March 2010 UN Commission on Narcotics Drugs Meeting. United National Office on Drugs and Crime. Available at: www.youtube.com/watch?v=G7sz0vzk09E
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18. Dhaliwal M. Harm reduction 2010 the next generation: addressing the development dimensions. Presented at the 21st International Harm Reduction Association Annual Conference; 2010; Liverpool, UK.
19. Statement on the care and protection of children in institutions in Cambodia. Press release. UNICEF East Asia & Pacific Regional Office, June 8, 2010. Available at: www.unicef.org/eapro/UNICEF_Statement_on_HRW.pdf
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21. Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak. Promotion and protection of all human rights, civil, political, economic, social and cultural rights, including the right to development. The Human Rights Council, January 14, 2009. Available at: www2.ohchr.org/english/bodies/hrcouncil/docs/10session/A.HRC.10.44AEV.pdf
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23. Anonymous. UN official calls for decriminalizing drug use. Deutsche Presse-Agentur, October 27, 2009.
24. Interview with Director of the Drug Policy Coordination Unit of the European Commission Carel Edwards. HCLU. Abuse in the name of drug treatment. Hungarian Civil Liberties Union, 2010. Available at: www.youtube.com/watch?v=G7sz0vzk09E
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27. The Belmont Report. Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research; 1979. Available at: http://ohsr.od.nih.gov/guidelines/belmont.html
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28. Gostin LO, Vanchieri C, Pope A, eds. Ethical Considerations for Research Involving Prisoners. Washington, DC: National Academy Press; 2006.
© 2011 Lippincott Williams & Wilkins, Inc.