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The Harvard case of Xu Xiping: Exploitation of the people, scientific advance, or genetic theft?

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Abstract

A unique history and make-up of a population may make it an attractive research target for population geneticists and pharmaco-genomic investors. The promise of pharmaceutical profits and advances in medical knowledge attracted Harvard researchers and the company Millennium Pharmaceuticals to remote areas in Anhui Province, Central China, leading to international diplomatic disagreements about issues such as the ownership of genetic material and informed consent (IC). This article discusses the role of genomics and genetic sampling in China, the way it is related to population policies (the new eugenics), the national importance of genetic materials and the conflicts it led to between the Chinese government and Harvard University. Here many consider the Xu Xiping case as textbook example of ruthless Western exploitation of development countries, illustrating the cold rationality of science in the process of globalisation. Ten perspectives on this case show that this view is simplistic and contributes little to an understanding of bioethical issues important to the population actually donating the samples. Viewing the Xu Xiping case as the nexus of the intertwinement of international, transnational, national, and local interest groups shows how different interest groups make use of different units of analysis. It also clarifies why the same practice of genetic sampling continues under a different regime, and why the discussion about genetic sampling has shifted from a concern with health care of the poor to an issue of international exploitation, terrorism and development.
The Harvard case of Xu Xiping: exploitation of the
people, scientific advance, or genetic theft?
MARGARET SLEEBOOM
xxxx Q1
A
BSTRACT A unique genetic history and make-up of a population may make it an attractive
research target for population geneticists and pharmaco-genomic investors. The promise of
pharmaceutical profits and advances in medical knowledge attracted Harvard researchers and
the company Millennium Pharmaceuticals to remote areas in Anhui Province, Central
China, leading to international diplomatic disagreements about issues such as the ownership of
genetic material and informed consent (IC).
This paper discusses the role of genomics and genetic sampling in China, the way it is related to
population pol icies (the new eugenics), the national importance of genetic mate rials and the
conflicts it led to between the Chinese government and Harvard University. Here many
consider the Xu Xiping case as a textbook example of ruthless Western exploitation of
development countries, illustrating the cold rationality of science in the process of globalisation.
Ten perspectives on this case show that this view is simplistic and contributes little to an
understanding of bioethical issues important to the population actually donating the samples.
Viewing the Xu Xiping case as the nexus of the intertwinement of international, transnational,
national, and local interest groups shows how different interest groups make use of different units of
analysis. It also clarifies why the same practice of genetic sampling continues under a different
reg ime, and why the discussion about genetic sampling has shifted from a concern with health
care of the poor to an issue of international exploitation, terrorism and development.
Introduction
In my research on the application of new genetics and vulnerable groupings in
Asia, the concept of vulnerability is problematic. In many respects, views on vul-
nerability depend either on who is speaking or on what risks particular groups are
exposed to. In general, however, agreements exist on the criteria by which groups
are regarded as vulnerable. Thus, it is generally agreed that impoverished illiterate
peoples may be too easily persuaded to donate blood samples against a small fee or
service. Nevertheless, diverging views exist about the practice of such genetic
sampling, largely reflecting the multiple social and economic contexts of the
persons in relation to the practice. In other words, multiple actor s with diffuse
and blurred interests and identities articulate their views through multiple
Correspondence to: Margaret Sleeboom, Beatrixstraat 2, 2202 NR Noordwijk, The Netherlands,
Email: m.sleeboom@wanadoo.nl
New Genetics and Society, Vol. 24, No. 1, April 2005
ISSN 1463-6778 print/ISSN 1469-9915 online/05/0100059-22 # 2005 Taylor & Francis Ltd
DOI: 10.1080/14636770500037776
frames of references and interests. The complexity of their interaction, partly due
to the very diversity of the sampling practices themselves, show that discussions on
genetic sampling and the requirement of informed consent are fragmented and
diffuse. Moreover, the views of the stakeholder s involved are far more sophisti-
cated and context-dependant than discussions on the bioethical correctness of
Xu Xiping’s projects suggest.
This paper emphasises the importance of delineating the divergence of interests
groups, their self-definitions, and their institutional settings in the study of genetics
and society. I examine the stated aims of various groups of actors in the constellation
of conflicts that resulted from genetic research led by Harvard researcher Xu Xiping
in Anhui Province. The 10 perspectives examined here include those of nation-states
(the USA and the PRC) in defence of the interest of the people, pharmaceutical com-
panies in defence of the interests of clients, university researchers that claim to work
in the interest of science, and patients that want to get better. It is important to note
here that the 10 perspectives described are the views of people who have the will and
ability to write and publish about the case of Xu Xiping. I grouped these perspectives
according to the kinds of interests and ideals they defend in their writing, i.e. national
interests, scientific knowledge, human health, developing medicine, human rights,
academic interests and money. Such interests appear to be linked to the daily activi-
ties and ideals adopted by these groups, although, as will be shown, social institutions
and ideologies limit the way in which these interests are defined and expressed.
This also has implications for the way students of society link their research problems
and analyse their units of research. The concluding part of this article discusses
this issue with relation to ‘informed consent’ in genetic sampling.
Central in this paper is the analysis of conflicts between groups as expressed in the
ways in which they define themselves and one another in their institutional context.
Without taking the specific institutional contexts and histories into account, and
without examining the processes in which the various institutional rules and inter-
ests are accommodated, the dynamics of the Xu Xiping case and the practice of
genetic sampling in China remains underexposed. For, the conflicts result from
the coinciding accumulative effects of personal and institutional actions with,
mainly, unintended socio-economic consequences of historical processes.
In short, instead of just concentrating on a surface of simple conflicts between
opposite groups at a national level, a deeper understanding of the debate around
Xu Xiping must proceed from a multi-sited and multi-level approach. It should
take into account the open-endedness and complexity of ongoing clashes and fric-
tions of interests. These interests are expressions of a continuously changing dis-
course, whose expression in this article are only momentary and aspectual
glimpses of ideals, goals and drives of groups that develop in close relation with
other institutional concerns.
The Human Genome Diversity Project (HGD project) in China
As the Human Genome Project (HGP) is completing the ‘map’ of the ‘average’
human genome, the interest in sampling populations to study human group
60 Margaret Sleeboom
and individual genetic diversity has grown. The HGD project, initiated in 1991,
engages in the collection of genetic material from select populations to identify
differences in genetic sequences between populations.
In China, the HGP began in November 1993. It is especially interested in deter-
mining the types and incidences of genetic diseases and to preserve each ethnic
group’s genetic materials. Because of an increase in intermarriage and the per-
ceived dilution of the unique genetic material of China’s minority ethnic
groups, the Chinese HGD project proposed to collect the DNA samples of indi-
genous peoples and store the collections in gene banks. China is interesting to
geneticists because some of its rural populations and ethnic groups are thought
to have remained static for centuries, making each region different in its pattern
of genes and diseases. The Chinese HGD project is particularly interested in
the ‘national minorities’ (xiaoshu minzu) of Central and Southwest China.
Because the HGD project collects blood samples, various protest groups have
called it the ‘Vampire Project’ (Lock, 1994), while others object to its lack of com-
munication and negotiation with community representatives (Macer, 1998). For
these and other reasons, the HGD project came to a halt in the US. The Chinese
HGD project, however, is still going on strong. A large gene bank for ethnic min-
orities in Yunnan Province aims to study the diversification of inheritance and
inherited diseases of the ethnic minorities. It stores 1,250 men’s DNA from 25
ethnic groups in the province. The men who gave samples have no history for mar-
rying other ethnic peoples, and every man has the same ethnic origin for at least
three generations in succession. As they live in remote areas, they are thought to
have high purity and separation degrees. The gene bank, according to the Q2People’s
Daily (28 November 2000) is so far the largest of its kind in the world that has
adopted the standard of the international human genome programme.
One aim of the gene bank is to reconstruct the history of populations by study-
ing genetic variation to determine patter ns of human migration. These new
findings can be used to make claims on disputed territory, resources, and
self-determination. Of course, many factors contribute to population differences,
such as culture, language, environment, and lived experience. Nevertheless, the
identification of genetic difference between ethnic groups (such as a different
gene sequence that causes immunity to a disease) is expected to have human
(medical, cultural or historical) and economic value. This perceived value has
led universities, governments, corporations, and private researchers to invest
immense efforts into identifying human genetic variation.
Worries about the Eugenics Law and about genetic theft
New genetic technologies play a major role in the political issues of the new
eugenics, improving the quality of the population and the one-child birth policy
(Mao Xin, 1998, pp. 6923; Nie Jingbao, 1999, p. 177; Wang Yanguang,
2004). As genetic technologies have become available to the state in policies
aimed at raising the quality of the population, concerns have been voiced that gen-
etics may entail compulsory sterilisation or abortion of those found to possess
The Harvard case of Xu Xiping 61
‘undesirable’ genetic sequences.
1
The introduction of the Law of the PRC on
Maternal and Infant Health Care (Ministry of Public Health, 1994) supports the
systematic ‘implementation of premarital medical check-ups’ on hereditary,
venereal or reproductive disorder as well as mental disorder so as to prevent
‘inferior births’. Affected groups are rendered socially marginal due to the
make-up of their DNA (Diko¨tter, 1997).
In 1996, the Paris-based company Genset, signed a letter of intent with the
Chinese Academy of Medical Sciences (CAMS). Genset, working with the
French trading company Tang Fre
`
re Inter national, planned to employ some
twenty researchers to collect the DNA and diagnose diseases. Samples were to
be analysed in Paris using gene-sequencing machines with the aim of developing
diagnostic tests and new drugs. When Genset and the CAMS worked out the
details of the agreement, Genset President Pascal Brandys announced their inten-
tion to have clauses related to ethics, and CAMS Vice President Lu Shendong and
President Ba Denian declared ( Q3New Scientist, 8 November 1996):
We view gene research as extremely important for Chinese health care in
the 21st Century and we are convinced that our joint effort will lead to
fundamental discoveries which will benefit not just China but the rest of
the world.
However, an 11 March 1996 article in the Journal of Q4CAMS (Zhongguo Yixue
Kexueyuan Yuanbao), warned that China faces the prospect that the genes of hun-
dreds of millions of its people may become the pr iceless resources of foreign
pharmaceutical companies. The Journal, referring to a story in the 9 July 1996
issue of Science magazine, reported that a drug company-supported research
program involving Harvard University researchers and six Chinese medical
centres were going to sample the blood and genes of 200 million Chinese
people. Unless measures were taken, these resources would be incorporated
into foreign products without bringing any benefit to the Chinese people who
furnish the genetic resources.
In early 1997, financial details about a Millennium-Harvard deal in Anhui
leaked to the Chinese press and caused a storm of criticism. The idea of US capi-
talists profiting from China’s genetic heritage sparked such a fury that foreign
genetic research was stalled for a year. At the same time, the State Science and
Technology Commission (SSTC) organised the regulation of the collection,
handling, and export of genetic material in the Interim Measures for the Adminis-
tration of Human Genetic Resources, promulgated by the General Office of the
State Council upon its approval on 10 June 1998 (Ministry of Science and Tech-
nology & the Ministry of Public Health, 1998). It made very clear that genetic
resources were not to be taken abroad without permission and observing due pro-
cedures as defined in the Interim Measures.
Bioethical issues concerning the actually sample population, such as that of IC,
were emphasised in the press more than in the Interim Measures, which focuses on
issues of national interests. Newspaper discussions referred to human exper-
iments on POWs, undertaken by Japanese and German scientists during
62 Margaret Sleeboom
WWII, the various treaties with relation to human experimentation, such as the
Nuremberg Treaty of 1947, the Helsinki Treaties of 1964 and 2000, the UN
1998 Declaration on the HGP and Human Rights, and the 1996 and 2000
declarations of the WHO. Southern Weekend (Nanfang Zhoumo) even mentioned
that on 18 April 1979, the US government declared the ethical policy against
‘lure by promise of gain’, meaning that IC cannot be obtained under pressure
or by means of promises of rewards (Xiong Lei, 2002).
The Washington Post watershed
In December 2000, the Harvard investigator Xu Xiping became subject of an
investigative article written by Washington Post reporters John Pomfret and
Deborrah Nelson. Xu’s research, carried out in a poor region of Anhui Province
in central China, supported by US government grants along with money from
Millennium Pharmaceuticals Inc., of Cambridge (Mass.) started to cause diplo-
matic upheaval (Pomfret & Nelson, 2000).
The project had been conceived by Geoffrey Duyk, a Harvard geneticist con-
nected with pharmaceutical industry. He found research collaborators in Scott
Weis, a prominent Harvard respiratory epidemiologist, who had an interesting
cell line on 62 million people in Anhui province, and a postdoctoral researcher,
Xu Xiping, with hometown connections in Anhui Province, who was to recruit
thousands of volunteers. A pilot study began in 1994, and within a year, Millen-
nium agreed to pay US$3 million for the DNA of thousands of Anhui residents to
be collected through a collaborative effort among Harvard, Brigham and Women’s
Hospital (a Harvard affiliate) and Xu’s alma mater, Anhui Medical University.
Millennium announced the deal in July 1995, just after the controversial eugenics
law had taken effect, and many deals were to follow (Pomfret & Nelson, 2000).
After the December 2000 Washington Post report, Xu’s work became the subject
of US government investigation. Early 2001, the Chinese government investi-
gated Xu’s projects following an article by Xiong Lei (xxxx Q5)inOutlook,a
popular Chinese weekly, which repeated and expanded on some of the allegations
in the Washington Post report. In August 2001, Harvard University strongly criti-
cised Xu Xiping for writing letters to Chinese government officials that urged
Beijing to censor news reports on genetic experiments and to take action
against critics of his research (Pomfret, 2001). Xu was warned against indepen-
dently campaigning against his critics, and several of his projects were brought
to a halt early 2002 (Shan Jinliang & Ma Ning, 2002).
Ten perspectives on the Xu Xiping case
The Xu Xiping case shows a complex intertwinement of financial and bioethical
interests between researchers, pharmaceutical companies, multinational compa-
nies, national governments, academic leaders and institutions and local popu-
lations. The case is known also as the story of how an American exploited the
vulnerability and gullibility of a backward population in the desolation of moun-
tainous Anhui province.
The Harvard case of Xu Xiping 63
A look at the different parts of people in and reactions to the Xu Xiping case
may bring more nuance into this view and shed light onto the question of how
to best approach the issue of IC in genetic sampling. I here discuss 10 different
perspectives that represent the views and ideals of different interest groups. Differ-
ent group perspectives from people affiliated with different institutions, as will
become clear, also tend to make use of different units of research. This makes it
difficult to decide with whom responsibility for the way IC is acquired should
reside, and what value should be attached to it.
1. Xu Xiping: scientific research to improve universal health care
Xu Xiping is Associate Professor of Occupational Epidemiology with the Depart-
ment of Environmental Health, heads the Programme for Population Genetics at
the Harvard School of Public Health, is Associate Professor of Medicine at
Harvard Medical School, and co-chairs the China project of the Harvard Univer-
sity Committee on Environment. In the early 1970s, Xu started out his career in
Anhui Province as a ‘barefoot doctor’, but in 1982 he acquired a Medical Degree
from Anhui Medical University. He continued his studies at the University of
Tsukuba, where he was awarded a PhD in 1988, after which he moved to
Harvard University, where he ear ned a Master’s Degree in biostatistics in 1993
(see <http://www.hsph.harvard.edu/facres/xu.html>). Xu is particularly inter-
ested in understanding the interaction between genetic and environmental
factors in the occurrence of complex diseases in human populations. In 1994,
he received encouragement in this field from Song Jian, chair man of the State
Science and Technology, and in 2002 from Xie Zhenghua, the head of the
Chinese Environmental Protection Agency (Gewertz, 2000).
To acquire an idea of how Xu obtained financial support and of the value
attached to population research, a look at the arguments he used in his March
1997 project application to the National Institute of Health (NIH) may be
instructive (Xiong Lei, 2001). In it he states that Anqing is ideal as a research
target for the following reasons:
1. The type of asthma prevalent is the same type as in the West;
2. Anhui chronic sufferers of asthma, compared to Western ones, hardly ever
receive medicine, enabling researchers to trace distortions in the medical
syndrome;
3. Divorce is rare in China, households are stable and villages are usually closed
off. This facilitates the collection of harmonious data;
4. The Chinese household is bigger in scale compared to the Western home;
5. The population of Anqing has been stable over the last 1,000 years;
6. The current production expenses for are very low, so Xu would have no
problem to have millions of samples taken from experimentees at low costs;
7. In Anqing Xu found a phenomenal co-operation rate of 95%;
8. There was no comparative research based on Asians, especially on Chinese,
even though the Chinese constitute one/fifth of the world population.
64 Margaret Sleeboom
9. Finally, Xu refers to his wide experience in China, the quality of his research
team and the ability to collect high quality data.
Important to note is that the arguments for his research are structured to convince
the NIH board of the project’s merits to patients in wealthy countries, not to those
in China. Even though the arguments may not be very persuasive, as evidence for
population stability is not reliable, the general conditions of a co-operative popu-
lation, scientific promise, and low production costs must have been tempting.
But, in 1997, Xu was accused of smuggling Chinese DNA. Xu denied this,
saying that he had received permission to take DNA out of China with the help
of Anhui officials. However, in 1998, Xu had set up a company in Boston to
co-ordinate private research ventures with the newly set up Meizhong Institute,
which shifted activities to China. Furthermore, criticism of Xu’s work in Huaining
County led a team of social scientists to inter view asthma volunteers for a UN-
funded public health study. Several of them refused to co-operate, because of
their experiences with Xu’s project: they had been promised free medical treat-
ment but never received it. After learning of the issue from The Washington Post,
Xu said he wasn’t aware of any complaints from asthma families (Pomfret, 2001).
Xu’s hospital projects were also criticized for the use they made of Communist
Party officials to find volunteers by doing thought work. Co-operation was exerted
by relying on people’s dependence on the Communist Party and local government
for favors involving taxes and the division of land. However, Xu’s Harvard spokes-
woman Robin Herman denied that Xu or other Harvard researchers had ever
been involved in such an effort (Pomfret & Nelson, 2000).
Xu regards himself as an enlightened scientist who unselfishly helps people by
mobilising his resources and using his skills to provide healthcare data to medicine
producers and by teaching indigenous researchers about genetics. Despite the cri-
ticism of smuggling data, breaking promises of free health care, unethical data col-
lection and accomplice to forcing co-operation form patients, Xu showed no sense
of responsibility for any of these allegations. Instead, he blamed less enlightened
people, such as local physicians and executors.
2. Xiong Lei: science must serve the people
Xiong Lei, a top journalist for the state-run New China News Agency (Xin-
huashe), spent a long time on the Xu Xiping case trying to stand up for ‘the
people’ of China. Her reports became so influential that Xu Xiping saw Xiong
as a threat to his research; he asked the ministry of education to censure her
reports.
An article by Xiong Lei (xxxx Q6), published in the Chinese magazine Outlook, had
prompted the Chinese government to investigate Xu’s projects in early 2001. The
article repeated and expanded on some of the allegations in The Post’s report. Fol-
lowing the Outlook article, Xu Xiping wrote a letter to Wei Yu, China’s deputy
education minister, urging the suppression of a report by Xiong Lei, arguing
that its details should not be given to ‘foreigners’. He also wrote a letter to Bai
The Harvard case of Xu Xiping 65
Chunlin, vice-president of the Chinese Academy of Sciences, urging him to take
action against Yang Huanming, a leading Chinese geneticist (discussed below),
who had criticised Xu’s work (Shan Jinliang & Ma Ning, 2002).
In 1999, Xiong Lei conducted investigative research in Toutuo, an impover-
ished village in Yuexi district with an average yearly wage of less than E200, and
whose people became well-known as the victims of Xu’s projects. In 1996, a
new for m of co-operative medical centre was set up in Yuexi district under Xu’s
auspices, for which more than 1,400 samples were taken. A second time, in
1997, the selection was much stricter and only three-generation households
with at least two generations of asthma patients were selected: four households
in Toutuo; and 50 households in Yuexi district, counting a population of 400,000.
Xiong Lei went up to Toutuo in the remote countryside. There she interviewed
one of the in the asthma project participating households, that of the 60-year-old
Chu Mianzhai. The first time, on 5 November 1996, the family gave a little blood
for which they were given 10 Yuan as compensation each. The second time, on 10
March 1997, they gave a little more and were given 20 Yuan each. Old Chu also
received a bottle of medicine against his high blood pressure. The family insists
that no one had given them an overall check-up. They had read the IC form,
but they had not known about any co-operation with Harvard University. They
showed Xiong the IC form, which clearly indicated the co-operation and
explained the purpose of the project. It also promised free check-ups, treatment
and possibly preventative medicine in future. The Chus had not received them.
Neither did they know where the samples were to be stored. Chu had signed
the form, but mainly for the compensation (Xiong Lei & Wang Yan, 2001).
According to Xiong, their poverty had driven the Chus to give blood in
exchange for medical check-ups. Due to the high illiteracy rate, Xiong argues,
many people did not know what was going to happen to their samples and that
their samples was going to go into the DNA bank of Harvard University. Xiong
regards it as her task to stimulate discussion, and her articles can be very provo-
cative. Some researchers, according to Xiong, subconsciously look down upon the
people they study as mere research objects. But if you don’t respect them as
people, how could you go all the way to visit them and draw their blood? Just
for genetic experiments? ‘How is this different from the behaviour of fascist
researchers?’ she asks provokingly (Xiong Lei, 2002a, 2000b).
Because human experiments have to be transparent in their own countries and
because the costs are high, researchers increasingly look for participants in develop-
ing countries. To make this point clear, Xiong turns up at international conferences
on genetic research, introducing old Chu as an example of exploitation and mis-
management by foreign scientists (Tao Peipei & Li Hutao, 2001). Until today
she approaches organisers of international conferences with offers to bring Chu
Mianzhai and health workers along to promote international bioethical understand-
ing, promising that farmer Chu is an understanding and rational being who will not
embarrass conference participants. Will she be treated as a serious partner in dis-
cussion or as a campaigner against foreign exploiters of Chinese blood?
66 Margaret Sleeboom
3. Local scientists: science advances academic research
According to Liu Jianhui, the vice-director of science research management of
Anhui Medical University, in 1993 his institute had started working together
with Xu Xiping. Xu set up the Sino-American research institute for the biomedi-
cal study of the environment and hygiene. Liu co-operated in conducting physical
examination and blood draws. In 1998, the institute started to co-operate with
Harvard formally, establishing the Meizhong research institute for biomedicine
of Anhui Medical University. In both Hefei and Anqing laboratories for molecular
genetics were set up.
Among the Chinese counterparts of the Harvard research projects were
Beijing Medical University (at present the Beijing University Department of
Medicine), Anhui University and Anqing City Hospital. Liu emphasises that,
since 1998, one needs state permission to apply for research and also per-
mission to take samples abroad. For this reason, Liu claims, Xu Xiping built
a laboratory in Anhui. But no one knows how much material Xu has taken
abroad in the past. Xu himself admits that he has taken to America 164,000
samples; and according to his 1993 article, for his Anqing research on high
blood pressure he needed samples from over 200,000 people (Xiong Lei &
Wang Yan, 2001).
Liu, who effectively accused Xu of dodging the 1998 law on export of blood
samples, seems to be disappointed in the small part played by his institute in
the research. Liu feels that the co-operation was not very balanced. The
Chinese, he complained, should receive more information on the outcome of
the research and on the IC procedure that had been used. Thus Liu feels that
Chinese academic interests have been fr ustrated.
In the more positive view of Fang Zhi-an, Chinese academic interests are satis-
fied. Fang, head of the committee for health and education of the Anqing City’s
Peoples Congress’ Standing Committee, explains that Xu started his unofficial
research in 1993, when he was interested in the relationship between environment
and female fertility. To this end, he conducted research into the subject in Anqing
City’s textile factory. People accepted it as such, but found it strange that they
were asked so many questions about genetic diseases. In his account, Fang
makes out that Xu Xiping is a serious scientist with a healthy sense of curiosity
(Xiong Lei & Wang Yan, 2001).
Fang explains that through Xu’s co-operation the study of Anqing District
epidemiology has received a boost. Even though Anqing City could not directly
co-operate with Harvard, Fang dispatched personnel to be trained at the Sino-
American research centre. Fang, who is also a professor at Anqing Medical
University, believes that the Harvard co-operation has initiated the development
of local hyg iene work, and has trained both Chinese talents locally, in Anqing and
nationally. Relevant here probably is the fact that Fang and Xu have co-authored
more than 10 articles in international academic journals. Xu has already invested
6 million dollars in Anqing, used to cover the centre’s expenses, travel, research
and personnel (Xiong Lei & Wang Yan, 2001).
The Harvard case of Xu Xiping 67
It seems that local scientists have much to gain and much to lose by participat-
ing in experiments, as apart from learning about the usage of modern technologies
and methods, large sums of financial investment and academic status are involved.
These interests can, at least partly, explain some of the frustrations and satisfac-
tion of local scientists and leaders with the projects, disregards of the bioethical
question of IC.
4. Harvard University, the National Institute of Health (NIH) and the Office of
Health and Research Project (OHRP): the need for high profile research
Only after 1998, the reputations of Harvard University and the NIH were in
danger. In late 1999, the Department of Health and Human Ser vices launched
an investigation of Harvard’s genetic research in China, based on a complaint
of Gwendolyn Zahner, a former School of Public Health faculty member.
Zahner claimed that reviews of genetic studies hadn’t adequately weighed the
risks of the Chinese government misusing sensitive genetic information and
showed that some of Xu’s research appeared to have started ahead of any ethics
review. On her four investigative visits to Anhui, the police questioned her
twice: they knew her exact whereabouts and all the Chinese to whom she had
spoken (Pomfret & Nelson, 2000).
Harvard officials said they took cultural differences into consideration and built
protective measures into the studies to prevent the Chinese government from
obtaining participants’ genetic information. Harvard spokeswoman Robin
Herman reasoned that as Xu was principal investigator, his studies fell under
the purview of their institutional review processes. However, records show thou-
sands of DNA vials were being shipped from Anhui to Harvard for analysis and
storage under informal arrangements. Herman said Harvard officials now—in
the year 2000—realise that under US rules ethics approval was needed, after
reviewing regulations and a recent NIH advisory that clarified the rules. But
Frank E. Speizer, co-director of Brigham and Women’s Channing Laboratory,
who oversaw the asthma research, challenged the notion that residents from
Anhui needed special protection. Speizer believed China to be a ‘very sophisti-
cated country’ (Pomfret & Nelson, 2000). And at Millennium, chief business
officer Steven H. Holtzman, a presidential appointee to the National Bioethics
Advisory Commission, said he had no reason to believe that Harvard broke any
rules in carrying out company-sponsored research in China.
It seems that the main concern of Harvard, the NIH and Brigham’s Women’s
Hospital is the reputation of their institutes and the clarification of procedures
(c.f. Herman, 2003). These interests are not inherent to the personal objectives
of leaders and researchers, but are related to the history of the regulatory struc-
tures of research institutions. Scientists do not research ethics, they observe
regularities, create theories, and try out. Mistakes are related to professional
damage, rather than to moral failure. Thus, it was only in 2001 Xu was repri-
manded. Barry Bloom, dean of the Harvard School of Public Health, wrote to
Xu that he had to officially disassociate himself and the School from any
68 Margaret Sleeboom
actions he had taken to interfere with, or seek reprisals against, anyone who has
taken legitimate steps to raise issues about his research in China. If Xu continued
his campaign against journalists and others that questioned his research, he would
face ‘appropriate sanction’ (Pomfret, 2001).
This reprimand came as a result of the investigation by the Office of Human
Research Protections (OHRP), after a complaint lodged in September 1999. In
letters to two Harvard units, the Federal Office underscored the ethical pitfalls
of working with impoverished people in developing countries (OHRP Q7Infomail,
31 March xxxx). Consent forms often include complex language and researchers
in one study recruited thousands more volunteers than were authorised. Federal
officials had particular concerns about how researchers dealt with China’s
eugenics law that limits most couples to having a single child. In an asthma
study, supervised by the Harvard-affiliated Brigham and Women’s Hospital,
researchers sought out families that on average had more than four children. Iden-
tifying these families could have placed them at risk with the Chinese government
for violating the one-child law (Department of Q8Health and Human Services,
2002).
The Harvard School of Public Health said it supported the thrust of the federal
letter, but at the same time the school noted that federal officials ‘found no
instances of harm to any participants in our studies’ (Zitner, 2002). The School
said that Xu was now required to submit to a review of his research involving
human subjects every three to six months, instead of the usual twelve. In a
March 2002 letter to Brigham and Women’s Hospitals, federal officials said
some of Xu’s research was conducted without the necessary review by an Insti-
tutional Review Board (IRB). The investigation concluded that the continuing
review of research by the Harvard ethics committee regularly failed to be substan-
tive and meaningful (Stephens, 2002; c.f. Office for Human Research Protection,
2002).
Whether the Chinese population needs protection against researchers or not
has been a bone of contention, but most disputes over the Xu Xiping case were
related to institutional proceedings rather than to the bioethical rights and
wrongs done to the sampled population in Anhui. Even though the OHRP inves-
tigation led to a critical assessment of Xu’s research, it was the smell of diplomatic
trouble and accusations of interference with China’s internal politics for which
Bloom reprimand Xu, not for unethical research. In fact, Xu could continue his
research albeit under additional supervision. It was recognised that the problem
did not just concern IC and blood collection, but also the internal politics of
China, which combination could endanger the reproduction of participating
families.
5. Chu Jiayou: Chinese science serves national minorities
Chu Jiayou is the director of the Institute of Medical Biology, Chinese Academy of
Medical Sciences (CAMS), Kunming, and also heads the Chinese HGD project
and the Nationalities Gene Bank. The Chinese HGD project has become central
The Harvard case of Xu Xiping 69
to the Chinese HGP, which was inaugurated in 1993. The collection and preser-
vation of the population samples were considered to be a top priority in its first
phase that extended from 1993 to 1998 (Chu Jiayou, 2000), which, interestingly,
is the same period in which Xu did his Anhui research.
At a UNESCO conference on ‘Genomics of the South’, held in 2001, Chu
spoke about ‘Informed Consent in the Chinese HGD project’ (Chu Jiayou,
2001). There are 56 populations in China, each with their own designated area.
Some of them are genetically isolated. But as intermarriage among different
populations is on the increase, Chu points out, the preservation of the genome
of different populations’ has become an urgent matter. Chu explains that blood
samples of different populations were collected from healthy individuals,
through consultation with nationality scholars. Three generations were traced.
By providing medical consult to local people, Chu claims to have succeeded in
collecting a sufficient number of samples. Up until now, the cell bank and gene
bank of 22 different Chinese populations, including 2,000 DNA samples and
1,200 immortalised cell strains, have been established successfully. These, Chu
believes, are an important source of medical and genetic research in Chinese
populations. Meanwhile, the Chinese HGD project, including the correlation of
SNPs
2
, Y-chromosome, mtDNA polymorphisms
3
, and genetic polymorphism
with certain diseases, have attained significant achievements (Chu Jiayou, 2001).
Chu has per sonally conducted researched among 28 national minorities, apply-
ing strict criteria of IC for sampling. In an interview in June 2002, Chu explained
that he had been working as a physician among various minorities for many years.
He has even learnt four of their languages. Chu provided them with polio vaccines
and with vaccination for hepatitis A. As the people knew him well and trusted him,
they consented in donating blood for research. They knew that blood samples
were used for scientific research. This exchange of vaccine for samples, according
to Chu, amounted to IC used in the collection of blood samples between 1993
through 1998. Though Chu claims that ‘Proper informed consent was obtained
from each participating subject’, Xu’s critics have pointed out on many occasions
that procedures of IC in the collection of blood samples among the minorities
were not an issue then. It must be concluded, therefore, that at the time Chu’s
ethical correctness was outstanding and advanced.
6. Qiu Renzong: protect the human genome and safeguard human rights
Qiu Renzong is one of China’s leading medical ethicists, a member of the Human
Genome Organization (HUGO), the international organisation of scientists
involved in the HGP, and a senior government adviser. Qiu has called for a
joint US-Chinese review of the Xu Xiping case and the Harvard experiments.
According to Qiu, Xu Xiping as principal investigator makes him responsible
for everything that happened.
At the 2001 UNESCO conference on ‘Genomics in the South’, Qiu argued that
advances in high-tech including new genetics will bring great benefits to human
kind (Qiu Renzong, 2001). At the same time, however, he warned that they
70 Margaret Sleeboom
increase the possibility of violating human rights. High-tech may increase human
vulnerability to possible harm and the autonomy and privacy of people may be
more easily infringed upon, if they are treated as objects. For this reason, Qiu
argues, we must carefully review what kinds of positive and negative impacts on
human rights and interests that each important step of technological advance
may bring about. This statement is quite bold in a country that officially
regards the development of science and technology as its main area of moderniz-
ation and defines it as the ‘first productive force’.
With the advances of new genetics the tendency to reduce the person to his
genome or ‘genetic essentialism’ could intensify. The growth and development
of a person or the shaping of a person is the product of long-time and complicated
interaction between his multiple genes and his natural/social environment that is
not merely determined by his genes. Genetic essentialism and genetic determin-
ism, Qiu believes, may lead to the violation of human rights and interests.
Despite his human insights, Qiu’s political and biological views sometimes seem
to be at odds. For instance, Qiu (Qiu Renzong, 2001) opines that:
The results of human genome research should be applied to the treat-
ment and prevention of diseases. It is not ethically justifiable to use
them for eugenics or any attempt to ‘improve human races’ or make
‘superman’. It is not permissible to follow the disastrous road of
Nazi’s ‘race hygiene’.
From these views it follows that somehow human genome research could facilitate
a politic of ‘improving a particular race’, even though, in fact, genetics has shown
that the concept of race is scientifically not tenable (Qiu Renzong, 2001). Even
though Qiu’s view is a humanist one, it is important to note this erroneous
interpretation of the capacity of new genetics, as the notion of race plays an
important role in some Chinese discussions on the safety of new genetics research.
Moreover, a miscalculation of the possibilities of the new genetics, may also lead
to a misreading of the consequences of the 1995 mater nal and infant healthcare
law in China, whose eugenic nature Qiu rejects (c.f. Chen Z. et al., 1999).
Qiu also has warned that in China, IC faces many difficulties: first, 25% of the
population is illiterate or semi-literate; second, Chinese physician-researchers
have not paid much attention to developing skills of conveying information
about procedures, risks, and consequences for the patient; and, third, Chinese
culture contains a deep element of collective-oriented, holistic, socio-political
philosophy (Qiu Renzong, 1993). This presumably, would go against the grain
of an individualistic approach to IC.
Most importantly, Qiu expressed his concern about the societal and state influ-
ences that limit the reproductive lives of families. He argued that marriage or
reproduction is a choice made by the individual, other people and the state
have no right to intervene. For protecting the rights and interests of subjects in
genome research, Qiu argued, it is necessary to uphold the principle of IC embo-
died in Nuremberg Code and Helsinki Declaration. Here, Qiu seems to hit two
The Harvard case of Xu Xiping 71
birds with one stone, arguing against genetic sampling without IC and against
Chinese state-intervention in the area of human reproduction.
7. Yang Huanming: science in aid of developing countries!
In China, Xu’s critics have attempted to stop or at least slow his expanding genetic
research empire. Yang Huanming, the director of sequencing work for the
Chinese Human Genome Project, is one of them. Yang sits on the national
board appointed to review international collaborations. The board in 1999
rejected two of Xu’s research applications and held up a third as they could not
meet China’s newly enacted patient protection standards (Pomfret & Nelson,
2000). Yang claimed that Xu had appealed to Chinese leaders and forced a
compromise that would allow him to proceed with the projects if they received
approval from the US government. Yang, who has worked with the
United Nations on genetic research ethics did not hide his criticism of Harvard:
‘I hope that Harvard and the School of Public Health will understand that the
[recruiting] methods they used in China are unacceptable to the Chinese’
(Pomfret & Nelson, 2000).
At the 2001 conference on Sino-American co-operation, Yang showed his criti-
cism of Xu just as much as did Xiong Lei, who was present too (Tao Peipei & Li
Hutao, 2001). Xiong Lei related her Toutuo story, accusing Xu and his research-
ers of exploiting poor farmers (Xiong Lei & Xin Hao, 2001). Chen Changzhong,
from Anhui Medical University, defended Xu, claiming that their research
acquired a 100% IC. Yang sneered at him, promising that he would take
lessons from him, if that were really the case. Yang also asserted that Xu’s
taking abroad of genetic samples meant an immense problem for China: ‘for
who would profit from the knowledge gained from these samples?’ (Tao Peipei
& Li Hutao, 2001).
One year later, in a paper at the ‘Third International DNA Sampling Confer-
ence’ in Montreal in September 2002, Yang Q9Huanming declared that Human
Rights demand international validity and solidarity. In other words: co-operation
between the two worlds of developed and developing countries. Yang explained
the problematic nature of foreign research in China:
.
It takes place in a non-intact legal framework;
.
It lacks bioethical awareness;
.
It shows ignorance of the views and needs of the public;
.
Transactions with the local population are characterised by unfair benefit
sharing; and
.
There is no situation of faire and free exchange as scientific knowledge
(accrued from the large-scale collection of patient or family materials) ben-
efits companies abroad.
Yang Q9Huanming discussed the case of Xu Xiping, the poverty of his research
population, the way they had been cheated out of their DNA, and the backdating
of IC forms. Many of the papers of Chinese IRB were forged, he argues, for the
72 Margaret Sleeboom
first Chinese IRB was only set up in 1998 (two years after the start of Xu’s
research in 1996), and only three of Xu’s projects had been approved.
Yang’s criticism targets rich Western countries, taking advantage of a poor
developing country, such as China. As such his views have been applauded as
brave Q10and faire-minded. It is no less faire, however, to point out that Yang also
r uns his own laboratory in Beijing, called the ‘Huada Gene Research Centre’
(Huada Jiyin Yanjiu Zhongxin). According to Fang Zhouzi (2000), who visited
the lab, one of its project applications concer ns the ‘Chinese Genetic Multiple
Condition Plan’ for which the lab asks the government 800 million RMB
(approximately E1 million) in 2000. Its explanation included references to
foreign military attacks on the Chinese race by using biological weapons.
Though geneticists should now better and realise that the concept of ‘Chinese
race’ can only be of social or cultural meaning, the applicants then stick to military
formulations as they sought to solicit the support of the military.
8. China Production Daily, Beijing Youth: science makes China target
of biological weapons
Yang Huanming’s concern with Chinese science and its possibilities, and his insti-
tute’s racial and militarist formulations feed into nationalistic and racist interpret-
ations of the new genetics. One article in Q11China Production Daily (Zhongguo
Chanjing Xinwenbao), 12 April 2002 entitled, ‘For the sake of our national secur-
ity: carefully preserve our genetic code’ (Weile guojia anquan kanguanhao women de
yichuan mima), claimed that genetic engineering is used to make ethnic specific
biological weapons. For this reason, it argues, China must very fast develop this
technology by joint research, and at the same time to alert people to preserve
state and ethnic security. The article makes out that Sino-American joint research
projects in the 1990s used students and joint-research to steal Chinese blood and
to decode the DNA of the Chinese race. This code would provide information on
the Chinese immune system, which could be used to create genetic weapons.
The China Production Daily article claims that all Zhonghua Chinese, who stem
from the Yellow River and Changjiang, share the same genes. According to the
paper, the Americans thought that Anqing district, where the mobility of the
population is low, the blood relations relatively stable, and the dispense of medi-
cine relatively low, is not polluted yet. This f acilitates genetic experiment on
Orientals. Not only were human experiments done on the DNA of the Han and
the Tibetans, but research was also done into the differences between the
Eastern and Western genetic codes.
The paper maintains that China’s experience with two biological wars (with
Japan and the Korean defence war against the US), enabled it to work on its bio-
logical immunity against biological warfare. Since the 1950s, it has been built up
its medical, immunological, and nuclear defence, which has kept China safe for 50
years. But China’s weak nuclear deterrence and its policy of non-aggression
renders it vulnerable to high-tech genetic warf are. The solution, the paper
claims, lies in deterrence and vigilance.
The Harvard case of Xu Xiping 73
Another article in Beijing Youth ( Q12Beijing Qingnian Bao, 28 October 2000)
entitled, ‘We will start to research the characteristics of the national/ethnic
disease gene’ (Women jiang kaishi yanjiu minzu zhi bing jiyin de tedian), foresees
that foreign companies will steal Chinese genetic blueprints to produce medicine
and sell it dearly to the Chinese. For the different sequence in amino acids
between, say, Germans and Chinese could mean that medicine would be effective
to the one and not the other. A German scientist that realises this, Beijing Youth
claims, could adjust the medicine to target the Chinese. Foreigners could even
alter Chinese herbal medicine to tally with the Chinese genetic makeup and sell
it to the Chinese with large profit.
It is not hard to see that such articles in serious newspapers could lead to mis-
understanding about the nature of genetic research and to an atmosphere of inter-
national hostility. The nationalist hue of such language, unfortunately, is not just
to blame on the language used by non-scientists.
9. Fang Zhouzi: genes have no nationality
Fang Zhouzi, nom de plume of San Diego-based biochemist Dr Fang Shiming, cri-
ticises both Yang Huanming and scientific nonsense, arguing that people have a
right to hear the tr uth (Fang Zhouzi, 2001). Fang believes that it is, of course,
nonsense and unscientific to think that Americans are trying to destroy the
Chinese by unravelling their genetic code and making biological weapons. Why
should they do it even if they could? They would kill Chinese Americans, such
as Xu Xiping, at the same time. How can we speak of the existence of a Zhonghua
Minzu gene as a gene that all Chinese share? And what about the Chinese who
marry into other ‘races’?
Fang reminds the reader that the author and the editors of the first journal that
wrote about the ethical problems with Xu’s research, The Washington Post,isan
American newspaper, not Chinese. Fang Zhouzi laments that it is ridiculous
and harmful to even think of the US-administration spying on researchers at
Harvard to pass on secrets about Chinese DNA to the American military. For
‘This kind of talk hampers proper criticism of Xu Xiping’s behaviour, takes the
Chinese people for fools, and uses libel as a source of patriotic rubbish’ (Fang
Zhouzi, 2000).
10. Chinese official policies: American science is good for China
Despite the ups and downs in political relations between China and the United
States, China can be a good place to pursue co-operative research projects.
This is what the Chinese government seems to say to American scientists (of
which many are of Chinese origin).
In mid-July 1999, a delegation from the PRC, including Vice Minister of
Health Peng Yu, attended a meeting in Lexington, Massachusetts, organised by
the Association of Chinese Professionals in Biomedicine USA (ACPB). The
ACPB is composed predominantly of American scientists who came to the
74 Margaret Sleeboom
United States from China for advanced study and remained there to become
researchers and professors.
Peng’s goal in attending the conference (and subsequent meetings at the NIH)
was to ‘find a mechanism...to promote international co-operation [in scientific
research] between China and the USA’ (Watanabe, 1999). At the meeting joint
projects with China were encouraged, as China has well-trained scientists, a
large population whose people potentially could be enrolled in clinical studies.
For an American scientist who initially came to the United States from China
for advanced study and remained to become a professor or researcher, there are
added advantages to working with Chinese colleagues. The American scientists
speak the Chinese language, know the culture, may know the institution, and
may be friends or former classmates of their Chinese counterparts. This descrip-
tion seems to fit Xu Xiping’s exactly. Maybe not coincidentally, as the person pre-
siding over this institute was Xu Xiping.
Discussion: the unit of analysis and the issue of informed consent
A main problem in understanding genetic sampling is the definition of the groups
of people we want to examine. In other words, what criteria we use for including
people in a group we want to examine and how do we delineate their bioethical
interests from those of others. The suitability of the criteria we use for group deli-
neation depends on their relevance to the research problem at hand:
.
Defining a research population on the basis of genetic particularity seems to
be a problem in that we cannot apply the criteria until we have sampled the
population. Even if we find a shared genetic trait shared, we don’t know if
groups elsewhere share the same traits until we have sampled all people.
Neither do we know whether the trait is relevant as a criterion of distinction
in the case concerned. Xu Xiping’s research experience shows that this is a
problem also for scientists: Xu himself had to change the focus of his research
from asthma to blood pressure as he had overestimated the genetic homogen-
eity of the population of Anqing and underestimated its complexities vis-a
`
-vis
the environment, which of course is of central concern of genetic
epidemiology;
.
Some geneticists use language for defining a research population, others use
genealogical records. These cultural criteria lead to, to historians and social
scientists, familiar research problems. For languages are not static: they
migrate and change; and genealogical records are often faulty, or manipulated
for religious, personal and political ends. As the ‘family’ is not just a biological
concept, but also a phenomenon understood through changing cultural
meanings, it is difficult to define a stable research population. In other
words, the tools with which we define cultural change tend to correlate
with cultural change, though we are not sure how;
.
Lifestyle is another criteria used for defining cultural minority groups, such as
mountain peoples, slash-and-burning communities, and isolated sedentary
The Harvard case of Xu Xiping 75
communities. Similar problems occur here as exactly these groups tend to
have no historical records and often do their best to define themselves strate-
gically as different from other peoples as a form of self-preservation against
the ‘modern’ world (Barth, 1969);
.
Political criteria are used to define national minor ity groups in China: offi-
cially recognised national minorities have special administrative status.
Other g roups are categorised politically as a part of public health care
policy-making, such as in the application of eugenic criteria to groups of men-
tally handicapped. Furthermore, in the official press, links are made between
genetic make-up, having a criminal record, and being a country bumpkin
(Diko¨tter, 1998). In defining the bioethical interests of vulnerable groups
of people, we need to know whether we are going to group them against
foreign geneticists, Chinese geneticists or the Chinese state;
.
A distinction between local population and the national population may give
us insights into the difference between the organisation of local health care
and administrative interest g roups more directly related to the sample-popu-
lation. In the Xu Xiping case, it became clear that Party ideology, political
pressure, local corruption by officials and health workers, bribes of free
health-care and money all can have influence over the individual- or group-
decision to co-operate with researchers at a local level. We cannot automati-
cally assume that local is a reflection of the national situation. The question at
a local level is whether we do define the local bioethical interests of the sample
population against local Party cadres, local power monger or the career inter-
ests of local physicians, or against state policies, governmental decisions, pro-
vincial laws, and so on;
.
We could also make a distinction between privileged and disadvantaged
population groups by looking at which groups have access to health care.
The crumbling of the health care system in the Chinese countryside since
the 1980s, is a good indication of where to look for vulnerable groupings
(Qiu Renzong, 1999). On the other hand, private and collective health care
organisations have been set up in the country, too, so we cannot generalise
about the health care access of the entire rural population. It is obvious
that those with little or no money or no access to health care cannot be
expected to stand up for their bioethical interests as they are in no position
to give ‘free’ consent;
.
The criterion of education is of importance to institutes responsible for
research as IC forms are supposed to be understood by sample donators. If
the research population is regarded as backward and illiterate, this ethically
excludes them from giving IC. This criterion is interesting as it is also used
strategically by researchers to incapacitate other rivalling researchers. The
IC-forms of the actual researchers always seem to be in good order, according
to the researchers themselves;
.
Examining the interest of people that co-operated with Xu Xiping, economic
criteria can be used to define those who have access to science and technology
and investment capital, and those who have not. Chinese researchers,
76 Margaret Sleeboom
practitioners, and officials had a lot to gain from foreign investment and
foreign knowledge. Some had a better catch than others, which made, for
instance, Liu Jianhui more positive about Xu Xiping than Fang Zhi-an.
Yang Huanming’s views are an example of the defence of the intrinsic
Chinese nature of knowledge deduced from Chinese samples, despite his
long and rich scientific experience abroad and despite his optimism about
the rose future of humanity made possible by the new genetics;
.
The criterion of nationality seems to be crucial in discussions on genetic
sampling and IC. Particularly the extrapolation of Chinese and American/
Western interests has coloured the discussion to such an extent that the
nationality of the researchers has become of greater importance than the
bioethical fate of the sample donators. The familiar nationalistic image of
Americans targeting poor Chinese people and the allegation of prepar ing bio-
logical warfare against Orientals has been played upon by both gutter press
and academics of reputation;
.
The distinction between the wealthy nations and the developing world popu-
lation has also been important in the discussion, and of course rightly so: a
poor population incapable of affording health care is an easy target for exploi-
tation. Moreover, the lack of health care access makes such populations more
attractive to genetic researchers as the want of medication avoids distortions
of the medical picture. This fact by itself is a cruel irony, but not necessarily
the result of a global plot. On the other hand, the ‘Third World’ card has been
played out over and over again by members of the educated elite that have the
interest of their own research at heart.
What does this all mean for the issue of IC? First of all, the different criteria for
defining research groups lead to more questions: Are uneducated and underprivi-
leged individuals capable of giving IC? Do they know what it is about? Do they
understanding the language? Are they too poor to refuse? Are they under pressure
from others (relatives, the community, political par ties, and the state)? Are they
lured into giving IC by rewards?
Multiple aspects of groups and group definition at different levels are important
if we want to weigh the bioethical interests of donating groups against those of
other groups. Discussions have suggested to consider Group Consent (GC) as
an alternative for IC. Considering the many ways in which we can define
groups indicates that we need to make a political decision about who defines
and represent the groups involved. Can we be sure that village leaders or the
heads of households or governments represent the views of the groups involved
fairly? How can we make sure that national and local IRBs are impartial if nation-
alist interest play a part in decisions that transcend borders? Some governments,
such as those of Iceland and Estonia have been willing to sell out their
population’s genome. In these decisions the national unit of research was of
overriding importance. What is in the PRC?
In this paper I have argued for the need to view new genetics practices and
society as an interaction of groups and their histories at different levels of
The Harvard case of Xu Xiping 77
abstraction so that we can take into account the unintended consequences of his-
torical processes. I did this by examining the use of mater ials expressing the self-
justification of behaviour and action by the groups of people I believed to have a
stake in, and, therefore, to be relevant to, understanding the Harvard case of Xu
Xiping. These interests of these groups tend to be related to the aims and set-up of
the institutional context relevant to the problem at hand.
Thus, when discussing the Xu Xiping case, civil servants or party cadres tend to
use patriotic jargon, claiming to defend the nation against terror ism and the
exploitation of the motherland; population-policy makers speak in terms of
eugenic laws and improving the quality of the population; academics refer to
the institutional context (foreign company, hospital, university) to which their
scientific achievements are related; company leaders refer to the rules of inter-
national capital and economic development; and local power brokers speak of
caring for the community. Here qualitative social-science methods have an
important part to play in relating research regulation to actual practice. For
they enable the researcher to move back and forth between different levels of
abstraction and analysis: from the point of view of local and personal interests
to the regional, national and transnational factors in processes of globalisation.
Notes
1. Provincial regulations require one spouse to be sterilised if one or both partners suffer from a
‘serious hereditary’ disease. For example, the Henan Eugenics Law requires sterilisation of at
least one spouse if a married couple suffers from ‘chronic mental disorders’ such as
schizophrenia and manic depression ( Q13Henan Eugenics Law, supra note 45, at Article 8). In
addition, provincial regulations, such as those of Gansu Province, require the sterilisation of
married ‘mentally retarded’ persons (‘ Q14Chinese sterilising retarded who marry’, Chicago
Tribune, NYT News Service, 15 August 1991, at 58. Fujian, Guangdong, Henan, Liaoning
(‘Regulations on preventing inferior childbearing’), Sichuan, and Shanghai also had
‘eugenic’ laws by 1991). See also Gansu Q15Mentally Retarded Forbidden to Bear Children, FBIS-
CHI-88-229, 1 November 1988, at 63).
2. Though humans differ very little among themselves, the differences explain genetic proclivity.
Usually they are limited to differences in one base, called single nucleotide polymorphisms
[SNPs]. They refer to the locations in which one letter of the genetic code is different from
other persons. Nearly three million SNPs have been charted.
3. Mt DNA refers to the DNA in the mitochondrial choromosomes, organised structures in the
cell’s cytoplasm involved in the process, by which cells transform foodstuffs to generate energy.
Mitochondria contain their own complement of DNA that mutates slowly over the generations,
thus producing variation (Mt DNA polymorfism).
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Science and Technology and the Ministry of Public Health).
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PhD dissertation, University of Texas Medical Branch, USA.
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YR02/mar02b.pdf> (accessed xxx).
Office of Public Health and Science (2002) Letter to Keith Marcotte, Science Department of
Health and Human Services, Q19<http://ohrp.osophs.dhhs.gov/detrm_letrs/YR02/mar02a.pdf>
(accessed xxx).
Pomfret, John (2001) Harvard rebukes head of China gene study, Washington Post, 9 August, p. A14.
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Genome Project Millennium Pharmaceuticals Harvard School of Public Health, Washington
Post, 20 December, p. A01.
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[Sino-American co-operation evokes a big dispute. Hangzhou conference catalyses argument
on the ethics of genetics] (9 April), xxxx, <http://technology.china.com/zh_cn/science/
zhuanti/jiyinzu/2917/20010409/161451.html> (accessed: xxx).
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Margaret (ed) Genomics in Asia: A Clash of Bioethical Interests? (London: Kegan Paul).
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national collaboration in joint genetic research projects], Liaowang [Outlook], 13, 26 March.
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80 Margaret Sleeboom
Journal New Genetics and Society Article ID… CNGS103760
TO: CORRESPONDING AUTHOR
AUTHOR QUERIES - TO BE ANSWERED BY THE AUTHOR
The following queries have arisen during the typesetting of your manuscript. Please answer the
queries.
Q1
Please give author affiliation.
Q2
People’s Daily (28 November 2000): Not listed in References.
Q3
(New Scientist, 8 November 1996): Not listed in References – please list
accordingly if Lu Shendong and Ba Denian are quoted in article or if they
are the authors of article?
Q4
Journal of CAMS (Zhongguo Yixue Kexueyuan Yuanbao): Not listed in
References.
Q5
Xiong Lei (xxxx) in Outlook: The only listing in References for Outlook
are Xiong Lei & Wang Yan (2001) – is this same here, or another
reference to be listed separately?
Q6
Xiong Lei (xxxx): See #5.
Q7
‘In letters to two Harvard units, … working with impoverished people in
developing countries (OHRP Infomail, 31 March xxxx)’: Please give year
of publication; also doesn’t seem to be listed in References.
Q8
(Department of Health and Human Services, 2002): Not listed in
References.
Q9
‘…Yang Huanming declared that… Yang explained… Yang Huanming
discussed…’ Please give citation details for Yang and list in References.
Q10
‘…brave and faire-minded. It is no less faire…’: Please confirm OK to
spell as ‘faire’ and not ‘fair’?
Q11
China Production Daily (Zhongguo Chanjing Xinwenbao), 12 April 2002:
Not listed in References. (x2)
Q12
Beijing Youth (Beijing Qingnian Bao, 28 October 2000): Not listed in
References.
Q13
‘(Henan Eugenics Law, supra note 45, at Article 8): Not listed in
References.
Q14
(‘Chinese sterilising retarded who marry’, Chicago Tribune, NYT News
Service, 15 August 1991, at 58. Fujian, Guangdong,,,’: Chicago Tribune
not listed in References; also please clarify what ‘at 58’ refers to.
Q15
‘See also Gansu Mentally Retarded Forbidden to Bear Children, FBIS-
CHI-88-229, 1 November 1988, at 63)’: This article is also not listed in
References; please clarify ‘at 63’, thanks.
Q16
‘Chu Jiayou (2000)…pp. 95–05 (Hong Kong: World Scientific, New
Jersey, London, Singapore)’: Please give complete page numbers
(pp. 95–?05); also please clarify if publisher World Scientific is located
in all these cities/countries, i.e., Hong Kong, New Jersey, London and
Sin
g
a
p
ore. If
y
es
,
list all before
p
ublisher name.
Q17
‘Dikötter, Frank (1997)…In xxx (ed) China Information, pp. 1–13 (xxx:
xxx)’: Please give editor(s) name(s) and the city of publisher and
publisher name.
Q18
Fang Zhouzi (2000) and Fang Zhouzi (2001): Please give the respective
journal/newspaper/book names (xxx) of these references.
Q19
Please give date when each website was accessed, for the following:
Gewertz, Ken (2000)
Herman, Robin (2003): Also, please give name of journal.
Office for Human Research Protection (2002)
Office of Public Health and Science (2002): Also, not found in text
Qiu Renzong (2001): Also, shouldn’t
<http://south.genomics.org.cn/unsceo/referen.htm> be ‘unesco’?
Tao Peipei & Li Hutao (2001): Also, please give journal/newspaper name,
assuming as well that (9 April) refers to date of publication?
Q20
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of article.
Q21
Please give date when each website was accessed, for the following:
Xiong Lei (2001): Also, please give newspaper/journal name.
Xiong Lei & Xin Hao (2001): Also, please give newspaper/journal
name; and shouldn’t
Q22
<http://south.genomics.org.cn/unsceo/referen.htm> be ‘unesco’?
Xiong Lei (2002a) xxx, Nanfang Zhoumo…’: Please give title of article.
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... Ethicists regard some research in GE as problematic, as the banking of tissue and blood samples and information of human donors may unnecessarily put the privacy and confidentiality of donor populations at risk (Knoppers 2003;Gottweis and Peterson 2008;Sleeboom-Faulkner 2005. In the disciplines of international politics, bioethics, the ethics around the use and meaning of informed consent, privacy, autonomy and beneficence, has been seen as a neutral currency between countries negotiating and trading values (Salter and Salter 2007). ...
... In the 1990s, Chinese peoples' genetic resources became both a source of worry and of missed opportunity to health security, pharmaceutical exploitation and scientific progress. In 1996, US media revealed that a drug research programme involving Harvard University researchers and a company called Millennium tasked six Chinese medical centres with sampling the blood and genes of 200 million Chinese people (Pomfret and Nelson 2000;Sleeboom-Faulkner 2005). Soon, financial details about a Millennium¡Harvard deal in Anhui province was leaked to the Chinese press and caused a storm of criticism. ...
... In this spirit, other efforts by Beijing Genome Institute (BGI) with support from the Chinese Academy of Sciences to undertake the sequencing of 1% of the human genome in 1999 became a great source of national pride, as did BGI's first sequencing of the Asian (Chinese) genome in 2008 (Wang et al. 2008, 989). Similarly, the establishment of the Kunming ethnic DNA bank in 2006 did not just represent efforts to facilitate scientific research; it also expressed the wish to protect China's national genetic heritage and faith in China's future ability to become a dominant player at the forefront of global developments in the life sciences and the pharmaceutical industry (Sleeboom-Faulkner 2005). ...
Article
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Genetic epidemiology examines the role of genetic factors in determining health and disease in families and in populations to help addressing health problems in a responsible manner. This paper uses a case study of genetic epidemiology in Taizhou, China, to explore ways in which anthropology can contribute to the validation of studies in genetic epidemiology. It does so, first, by identifying potential overgeneralizations of data, often due to mismatching scale and, second, by examining it’s embedding in political, historical and local contexts. The example of the longitudinal cohort study in Taizhou illustrates dimensions of such ‘political scaling’. Political scaling is a notion used here to refer to the effects of scaling biases in relation to the justification of research in terms of relevance, reach and research ethics. The justification of a project on genetic epidemiology involves presenting a maximum of benefits and a minimum of burden for the population. To facilitate the delineation of political scaling, an analytical distinction between donating and benefiting communities was made using the notions of ‘scaling of relevance’, ‘scaling of reach’ and ‘scaling of ethics’. Political scaling results at least partly from factors external to research. By situating political scaling in the context of historical, political and local discourses, anthropologists can play a complementary role in genetic epidemiology.
... Research involving First Nations demands certain sensitivities and special requirements, such as community engagement, 50 respect for governing authorities and community customs, 51 and rights and proprietary interests of individuals and communities in biospecimens or data used in research. 52 In DTP genomic research, special consideration would have to be made of the particular community, and may therefore require researchers to adapt certain procedures and policies accordingly. ...
... From the perspective of foreign governments, however, compliance with research laws and regulations is non-negotiable and non-waivable by individual research participants. This position may be traced to several notorious incidents of misconduct by international researchers 15 as well as the economic and dignitary interests of countries Although there is significant interest in developing a direct-to-participant (DTP) research model where scientists can routinely recruit eligible participants beyond their countries' borders via the internet, regulatory bodies governing human subjects research in the vast majority of countries have not yet developed legal standards to facilitate this in practice, and there is great uncertainty surrounding DTP research. Hence, the urgent need to understand the international regulatory landscape in order to foster greater potential for a global DTP genomic research model. ...
... The distribution of research benefits may present problems related to the politics of distribution and redistribution, thus the preferences for individuals and groups directly affected by research participation will also need to be accounted for in assessments of research risk. Questions about the distribution of research data and findings, a purported benefit of research to society, to private firms have already become an important topic in the debate over genomic research (Cunningham-Burley 2006;Dressler 2009;Facio et al. 2011;Heeney et al. 2011;Hoedemaekers, Gordijn, and Pijnenburg 2007;Manasco 2005;McGuire et al. 2008aMcGuire et al. , 2008bReddy 2007;Resnik 2010;Sleeboom 2005;Winickoff 2001). ...
Article
International guidelines for the conduct of research with human participants, such as those put forth by the Council for International Organizations of Medical Sciences (CIOMS, 2002), recommend that research review committees account for social risk and benefits to society in their review of proposed research. What do the concepts “social” and “society” mean in the context of the review of human participants research? Here we analyze concepts of social and society to define the terms: social harm, social risk, social benefit, and benefits to society. We argue that use of these terms invite more questions than answers and beg for difficult empirical research to determine the nature, likelihood and magnitude of this category of risk and benefit. Until more research is done and these questions are answered, we advise reviewers to adopt an attitude of provisionalism and caution in their review of specifically “social” risks and benefits and “benefits to society”.
... However, the failure to mark the particularity of a potential patient population also occurs in RCTs, such as when the size, ethnicity, weight, age and other physiological features of patients are not taken into account (Leichleiter, 2014). Participants in RCTs may also be selected for their particular characteristics, be it genetic make-up, medical naivety, lack of alternative treatment, or absence of strict regulation in the country the RCT takes place (Sleeboom, 2005;Pomfret and Nelson, 2000;Petryna, 2007Petryna, , 2009. Even though in such cases patients may not have to pay for participation, they take a considerable medical risk and have no guarantee that any potential medical products will become available to them. ...
Article
Full-text available
This article aims to put into perspective the binary opposition between ‘scientific’ clinical research trials and ‘rogue’ experimental stem cell therapies, and to show why the ethics criteria used by the dominant science community are not suitable for distinguishing between adequate and inadequate treatments. By focusing on the grey area between clinical stem cell trials and stem cell experimentation, the experimental space where patients, medical professionals and life scientists negotiate for diverging reasons and aims, I show why idealised notions of ethics are not feasible for many stem cell scientists in low- and middle-income countries.
... Indie stały się rajem dla badaczy genomu ludzkiego, a ze względu na brak laboratoriów wyposażonych w sprzęt odpowiedni do identyfikacji nowych genów próbki wysyłano do naukowców z państw zachodnich. Taka sama sytuacja miała miejsce w przypadku materiału genetycznego zebranego na obszarze Chińskiej Republiki Ludowej (Sleeboom 2005). Procedura taka ujawniła obszary naruszeń etycznych podstaw badawczych. ...
Book
Część I Socjologia wobec wybranych aspektów relacji lekarz–pacjent Iwona Taranowicz Racjonalność lekarza a racjonalność pacjenta 17 Antonina Doroszewska Nauczanie komunikacji z pacjentem 28 Alicja Łaska-Formejster „Im więcej masz pieniędzy, tym łatwiej uzyskasz pomoc” – prawda czy fałsz w opinii pacjentów publicznych i niepublicznych zakładów opieki zdrowotnej 37 Część II Psychologia i Socjologia dla pacjentów onkologicznych i terminalnie chorych Teresa Świrydowicz Czy praca psychologa z osobami chorymi na chorobę nowotworową jest psychoterapią? 55 Małgorzata Synowiec-Piłat Kampanie społeczne na rzecz pacjentów onkologicznych i ich najbliższych 66 Małgorzata Synowiec-Piłat Realizacja idei upodmiotowienia na rzecz zdrowia w kampaniach społecznych dotyczących problematyki onkologicznej 84 Magdalena Smoczyńska Rola psychoonkologii we współczesnej medycynie 106 Sabina Pawlas-Czyż Pomoc społeczna w systemie instytucjonalnego wsparcia rodziny osoby chorej onkologicznie. Możliwości wdrażania profesjonalnych działań pomocowych w ramach pracy socjalnej 117 Część III przemiany w medycynie i opiece zdrowotnej. Szanse i zagrożenia Alicja Łaska-Formejster Wybrane aspekty funkcjonowania biobanków – perspektywa międzynarodowa 147 Jan Domaradzki Biologiczne obywatelstwo: genetyka i nowe formy przynależności 160 Katarzyna Kowal Przeszczep socjologii. O użyteczności wiedzy socjologicznej dla programu transplantacji ręki 171 Agnieszka Olchowska-Kotala Medycyna wobec niekonwencjonalnych metod terapii 198 Jadwiga Wais Ars moriendi w polskich szpitalach – prawa pacjenta 216 Magdalena Gajewska Położnicza polisemia. Medykalizacja i demedykalizacja jako ekstrema wyznaczające przestrzeń doświadczenia współczesnego rytuału przejścia 229 Luiza Nowakowska Humanizacja ciąży i porodu. Perspektywa socjologii medycyny 245 Część IV badania psychologiczne na temat wybranych zjawisk zdrowotnych Aleksandra Tyszka Profile psychologiczne pacjentów z chorobą niedokrwienną serca 257 Marta Kutniewska, Mikołaj Majkowicz Model oceny jakości życia u pacjentów hemodializowanych 267 Urszula Kanaffa-Kilijańska, Urszula Kaczmarek, Barbara Kilijańska Wpływ lęku stomatologicznego na stan zdrowia jamy ustnej 286
... It is important that researchers walk softly when encountering such issues, try not to jump to conclusions, and keep the lines of communication open with their research partners. 7 Cong (2004) 8 Sleeboom (2005) People can have strong emotional reactions when they encounter value systems that are in stark contrast to their own beliefs. ...
Chapter
It is important to recognize that the four “p”s - power, position, prestige and profit - too frequently drive science, business, academia, and the professions. This chapter is concerned with the importance of appropriate consent, the just distribution of the material benefits of scientific research, and the possible exploitation of research subjects. Informed consent and social consensus may not adequately address the related ethical issues involved in biobanking and other related research. Past experiences internationally, especially among the marginalized, are reviewed. The chapter explores whether benefits that accrue to those involved in research, and even the larger community, can rely on the concept of social consensus. Is there sufficient attention to transparency and adequate consideration of present and future harms and benefits to research subjects, their descendants and the broader community? Are conflicts of interest, real and potential, adequately acknowledged and addressed?
Chapter
The Convention on Biological Diversity (CBD) is a major international agreement to ensure the conservation of biological diversity, the sustainable use of various components of biological diversity, and fair and equitable access and benefit sharing of advances arising from the use of related genetic resources. The CBD excludes human genetic resources. In light of the rapid advances in biotechnology, genetic resources are increasingly being utilised by different types of users and in different industries. This usage is not confined to plants, animals or micro-organisms but includes human genetic resources and sometimes a mix of such resources. In the absence of any international agreement, various national governments are framing their own rules and guidelines. This patchwork of regulation may eventually impede global research efforts. This chapter argues that the CBD is qualified to be the central agency at the global level for the advance of broader benefit sharing frameworks. By implication, the scope of the CBD should be expanded to include human genetic resources. © 2013 Springer Science+Business Media Dordrecht. All rights reserved.
Article
Welcome collaborations: China can be a good place to pursue cooperative research projects, according to U.S. researchers who have done so there.
Conference Paper
Genetic, Linguistic and Archaeological Perspectives on Human Diversity in Southeast AsiaYunnan University, China, 26 – 27 June 2000Edited by: Li Jin (University of Texas, Houston, USA), Mark Seielstad (Harvard University, Boston, USA), Chunjie Xiao (Yunnan University, China)
Article
To identify Chinese geneticists' views of ethical issues in genetic testing and screening, a national survey was conducted. Of 402 Chinese geneticists asked to participate, 255 (63%) returned by mail anonymous questionnaires. The majority of respondents thought that genetic testing should be offered in the workplace for alpha-antitrypsin deficiency (95%) and the predisposition of executives to heart disease, cancer, and diabetes (94%); that genetic testing should be included in preemployment physical examinations (86%); that governments should require premarital carrier tests (86%), newborn screening for sickle cell (77%), and Duchenne muscular dystrophy (71%); and that children should be tested for genes for late-onset disorders such as Huntington disease (85%), susceptibility to cancers (85%), familial hypercholesterolemia (84%), alcoholism (69%), and Alzheimer disease (61%). Most believed that partners should know each other's genetic status before marriage (92%), that carriers of the same defective gene should not mate with each other (91%), and that women should have a prenatal diagnosis if medically indicated (91%). The majority said that in China decisions about family planning were shared by the couple (82%). More than half had views that, in China, there were no laws to prohibit disability discrimination (64%), particularly to protect people with adult polycystic kidney disease (57%), cystic fibrosis (56%), or genetic predisposition to other diseases (50%). To some extent, these results might provide a basis for a discussion of eugenics in China, particularly about China's Maternal and Infant Health Care Law (1994).
Women youquan zhidao—lai zi dabieshan de ge'an [We have the right to know—a case form Dabie Mountain
  • L Xiong
  • H Xin
Xiong, L. & Xin, H. (2001) Women youquan zhidao—lai zi dabieshan de ge'an [We have the right to know—a case form Dabie Mountain], <http://south.genomics.org.cn/unsceo/referen.htm>.
Harvard gene study in China is questioned
  • Aaron Zitner
Zitner, Aaron (2002) Harvard gene study in China is questioned, Los Angeles Times, 30 March. Q6
Voices behind the silence: Chinese moral views and experiences of abortion, PhD dissertation Letter to John A. Lichten, Dean for Administration and Finance, Harvard School for Public Health
  • J.-B Nie
Nie, J.-B. (1999) Voices behind the silence: Chinese moral views and experiences of abortion, PhD dissertation, University of Texas Medical Branch, USA. Office for Human Research Protection (2002) Letter to John A. Lichten, Dean for Administration and Finance, Harvard School for Public Health, <http://ohrp.osophs.dhhs.gov/detrm_letrs/ YR02/mar02b.pdf>. Office of Public Health and Science (2002) Letter to Keith Marcotte, Science Department of Health and Human Services, <http://ohrp.osophs.dhhs.gov/detrm_letrs/YR02/mar02a.pdf>. People's Daily (2000) World's largest gene bank for ethnic people set up in Yunnan, 28 November.