[Paleopsych] AmJHumGenet: Xin Mao: Eugenics in China
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Mao, Eugenics in China
http://www.journals.uchicago.edu/AJHG/journal/issues/v63n3/980223/980223.text.html
Am. J. Hum. Genet., 63:688-695, 1998
0002-9297/98/6303-0006$02.00
Chinese Geneticists' Views of Ethical Issues in Genetic
Testing and Screening: Evidence for Eugenics in China
Xin Mao
Division of Genetics, Department of Psychiatry, West China
University of Medical Sciences, Chengdu, China
Received March 16, 1998; accepted for publication July 15, 1998;
electronically published August 21, 1998.
Summary
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 a
-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 [1]Maternal and Infant
Health Care Law (1994).
_________________________________________________________________
Address for correspondence and reprints: Dr. Xin Mao, Section
of Molecular Carcinogenesis, Haddow Laboratories, Institute of
Cancer Research, 15 Cotswold Road, Sutton, Surrey SM2 5NG,
United Kingdom. E-mail: [2]xin at icr.ac.uk
_________________________________________________________________
Introduction
Genetic testing and screening are hot topics that stimulate
widespread discussion and debate, not only among genetics
professionals, but among clinicians and scientists generally, and
increasingly these topics involve the wider public in developed
countries. Views are expressed in the scientific and general press,
and through other media, about the likely benefits and dangers that
may result from genetic testing and screening ([3]Harper and Clarke
1997).
However, there is much less debate about genetic testing and
screening in developing countries, where ?1 95% of the world's
future children will be born. To some extent, this situation
reflects the lack of genetics services in these countries. A
majority (3,330) of the estimated 5,000 specialists in medical
genetics worldwide work in developed countries, which have an
overall geneticist/population ratio of ?1 1:222,000, compared with a
ratio of ?1 1:700,000 for eastern European countries and ?1
1:3,700,000 for developing countries ([4]Wertz et al. 1995).
Clinicians, scientists, and the public in developing countries are
focused on the struggle to improve basic health care. Given the
problems of poverty, illiteracy, low contraceptive use, and high
infant mortality ([5]Galjaard 1997), they have relatively little
interest in the development of genetics research and services.
China, however, is an exception, having to some extent made
genetics a priority. For example, in the 1960s cytogenetics
technology was introduced to China, and in the 1970s chorionic
villi sampling was performed in some hospitals ([6]Luo 1988). Since
the 1980s, molecular-genetic techniques have been used in genetic
research and counseling in several national genetic laboratories
([7]Luo 1988; [8]Fu et al. 1995). In 1988, in vitro fertilization,
embryo transfer, and gamete intrafallopian transfer were available
in several teaching hospitals ([9]Zhang et al. 1988). In 1992, the
techniques of enrichment of fetal cells from maternal blood, for
prenatal diagnosis and sex determination during the first trimester,
were introduced to China. In 1994, China launched its Human Genome
Project ([10]Li 1994). Gene therapy for patients with hemophilia B
has also been used in clinical trials ([11]Fu et al. 1995).
On the other hand, according to international standards,
genetics services in China are underdeveloped because of a lack of
funding and expertise, as well as the large number of people with
genetic conditions ([12]Harper and Harris 1986; [13]Luo 1988).
Chinese geneticists have expressed their views about ethical,
legal,and social issues in genetics research and practice in China.
Their concerns are, however, quite different from those of other
countries, particularly developed nations (Mao [14]1996, [15]1997;
[16]Mao and Wertz 1997).
The term "eugenics" has many meanings. Eugenics can be
voluntary or coerced, government sponsored or individual, a
"science" or a social policy, based on the welfare of individuals
oron the welfare of society or a nation ([17]Paul 1992; [18]Garver
and Garver 1994; [19]Larson 1995; [20]"Brave New Now" 1997). Most
people in developed countries today think of eugenics as a coercive
social program enforced by the state for the good of society. Since
China announced the [21]Maternal and Infant Health Care Law (1994),
it has provoked widespread concern in the international scientific
community, because of some of its eugenic content ([22]"China's
Misconception of Eugenics" 1994; [23]"Western Eyes on China's Eugenic
Law" 1995; [24]O'Brien 1996; [25]"Brave New Now" 1997; [26]Harper and
Clarke 1997; [27]Morton 1998). There has, however, been very little
international discussion on what eugenics means for Chinese
geneticists and why it is alive and well in China. In this article,
I will present Chinese geneticists' views of ethical issues in
genetic testing and screening and will discuss the likely basis of
eugenics in China, particularly China's [28]Maternal and Infant
Health Care Law (1994).
Subject and Methods
An anonymous international questionnaire including 50 questions
on ethical issues, which was used in an international study
comparing attitudes of geneticists in 37 nations ([29]Wertz and
Fletcher 1993), was distributed to 402 geneticists in 30 provinces
and autonomous regions in mainland China. These geneticists were
registered members of the Chinese Association of Medical Genetics,
the Human and Medical Genetics Branch of the Chinese Society of
Genetics, or the Chinese Society of Family Planning, all of which
are headed by the Chinese Association for Science and Technology
butare affiliated with different departments of state (the Ministry
of Public Health, the Chinese Academy of Science, and the National
Committee of Family Planning, respectively). In all, 255 geneticists
(63%) responded. All of the respondents' comments were translated
into English. The completed questionnaires were mailed to the
Division of Social Science, Ethics and Law, at the Shriver Center
for Mental Retardation, in the United States, for statistical
analysis. Coded data were entered into the SPSSX program (from
Statistical Package for the Social Sciences) on an IBM 3090
computer([30]Mao and Wertz 1997).
Results
The questionnaire asked whether genetic testing should be
offered for job application - related situations; the majority of
respondents thought that genetic testing should be offered to
workers for a -antitrypsin deficiency in a very dirty workplace
(95%) and for executives' predisposition to heart disease, cancer,
and diabetes (94%).
The questionnaire listed several ethical issues designed to
survey respondents' opinions. The majority of respondents agreed
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%), that women should have prenatal
diagnosis if it is medically indicated (91%), that genetic testing
should be included in preemployment physical examinations (86%), and
that governments should require premarital carrier tests (86%) and
newborn screening for sickle cell anemia (77%) and for Duchenne
muscular dystrophy (DMD) (71%) ([31]table 1). Sixty-five percent
agreed with the statement that "an important goal of newborn
screening is to identify and counsel parental carriers before next
pregnancy."
[32][tb1.t.gif] Table 1 Views on Various Ethical Issues
When Chinese geneticists were asked whether parents should be
able to have their children tested for late-onset disorders or
predisposition to such diseases, the majority said that, if parents
request it, children should be tested for Huntington disease (85%),
susceptibility to cancers (85%), familial hypercholesterolemia (FH)
(84%), and predisposition to alcoholism (69%) or to Alzheimer
disease (AD) (61%) ([33]table 2).
[34][tb2.t.gif] Table 2 Views on the Testing of Children for
Late-Onset Disorders
When asked whether there was a prevailing pattern for
decisionsabout family planning, most (82%) said that decisions
about family planning were shared by the couple. The minority
believed it to be determined by the husband's (10%), doctor's (3%),
wife's (2%), husband's parents' (2%), or wife's parents' (1%) views
([35]table 3).
[36][tb3.t.gif] Table 3 Views on Family Decision Making
When asked whether there were any laws prohibiting disability
discrimination, more than half of Chinese respondents said that
there were no such laws in China (64%), particularly to protect
people with adult polycystic kidney disease (57%), cystic fibrosis
carriers (56%), and persons with genetic predisposition to other
diseases (50%) ([37]table 4). Ninety-four percent agreed with the
statement that "it is not fair for a child to be brought into the
world with a serious genetic disorder if the birth could have been
prevented;" 79% thought that some disabilities will never be
overcome even with maximum social support, and the majority would
not support disabled parents' decisions to have disabled children.
Ninety percent thought that an ethical code or guidelines for
genetics services are needed in China, and 50% said that public
education in genetics should be the top priority of the government
health budget.
[38][tb4.t.gif] Table 4 Views on Laws Prohibiting Disability
Discrimination
Discussion
Genetic testing, which is offered to individuals and families
who are at high risk, is either the analysis of a specific gene --
and/or its product or function -- or other DNA and chromosome
analysis, to detect or exclude an alteration likely to be
associated with a genetic disorder. Genetic screening is applied to
large population groups with unknown excess risk to individuals.
Screening is frequently part of government-sponsored public-health
programs and may be a preliminary procedure that identifies people
at elevated risk of genetic disease, but it does not provide a
definitive diagnosis ([39]Wertz et al. 1995; [40]Harper and Clarke
1997).
In this survey, questions about newborn genetic screening were
asked. This is because newborn screening for phenylketonuria (PKU)
and hypothyroidism has saved many thousands of infants worldwide
from these two severe disorders and therefore has created a large
store of goodwill and ethical credit in favor of genetic screening
programs ([41]Harper and Clarke 1997). This survey shows that 77% of
Chinese respondents thought that the government should require
newborn screening for sickle cell disease ([42]table 1). The figure
is higher than those for the United Kingdom (13%) and the United
States (11%) ([43]Wertz 1995). One explanation for this difference
might be that Chinese geneticists believe that identification of
parents and newborns who are heterozygous carriers is important,
since sickle cell disease is very common in China. Although newborn
screening for DMD fails to meet the established World Health
Organization guidelines for the adoption of a screening program
([44]Wilson and Jungner 1968), it might be helpful to avoid
diagnostic delays and to permit families to seek genetic counseling
before they embark on another pregnancy. The mothers of infants in
the United Kingdom appeared to have more enthusiasm for newborn
screening for DMD, since 94% of them would accept such screening
([45]Smith et al. 1990). When geneticists around the world were
asked whether the government should require newborn screening for
DMD, 71% of Chinese respondents, 64% of respondents in the United
States, and 49% of respondents in the United Kingdom thought that
the governments should do so ([46]table 1) ([47]Wertz 1995). On this
issue, the difference between geneticists in China and the United
Kingdom may be that Chinese geneticists believe that newborn
screening for DMD is a public-health issue, and that, because it is
very expensive in China, it must be government sponsored.
Geneticists in the United Kingdom are concerned about the state
directing genetic decisions, rather than individuals making the
choices ([48]Harper and Clarke 1997). In addition, the majority of
European, North American, and Chinese geneticists would recommend
newborn screening for cystic fibrosis, FH, fragile X, and
thalassemia if automated DNA diagnostic techniques were available on
newborn blood spots, even though there is no proof that the newborn
benefit from such screening ([49]Wertz 1995). It may still be
reasonable to offer such screening if the disease has its onset in
childhood and if the child's family finds it helpful to have an
early diagnosis ([50]Harper and Clarke 1997).
The advent of DNA-based testing across a wide and increasing
range of late-onset genetic disorders is a challenge to
conventionalthinking about medical tests. This is because those
individuals receiving an abnormal result are sometimes considered,
by themselves and others, to "have the disease," even though they
are still presymptomatic. Testing children for late-onset genetic
disorders may have serious ethical and social implications. This
survey shows that most Chinese geneticists thought that children
should be tested for susceptibility to cancers and FH ([51]table 2).
Most geneticists in Europe and North America expressed the same
view, since they saw early diagnosis and early treatment of these
disorders as being a potential benefit to the child ([52]Wertz
1995). However, most of them thought that testing for Huntington
disease, alcoholism, and AD provided no medical benefit to the
child ([53]Wertz 1995). They opposed the testing of children, on the
grounds that testing was an affront to the autonomy of the child,
who, on reaching adulthood, should be allowed to make his or her
own decisions on whether to be tested. Most Chinese geneticists
favored such testing ([54]table 2), on the grounds that parents
should be able to decide for their children and should have the
power to direct their children's lives. This cultural division
reflects the extension of individual autonomy in developed
countries, to include preservation of the autonomy of minors. In
China, the child is often seen as part of a collectivity (the
family), rather than as a potentially autonomous individual.
Although, thus far, employers' requests for employment-related
genetic testing have been few ([55]Harper and Clarke 1997),
questions on whether such testing should be offered were included
inthis survey because there is an ethical conflict between the
individual's rights and the employer's interest. More and more
Western geneticists have expressed their concerns on the likelihood
of misuse of such testing, which would cause harm to those
employeeswith genetic conditions (i.e., genetic discrimination;
[56]Harper and Clarke 1997). This survey shows, however, that most
Chinese geneticists agreed that such testing should be offered as a
part of a routine physical examination. This result may demonstrate
that Chinese geneticists hold strong social views on genetics
services ([57]Mao and Wertz 1997).
One purpose of genetics services is to provide accurate, full,
and unbiased information that individuals and families may use in
making decisions. Traditionally, China has been a paternalistic
society and parents have had absolute power to make family
decisions. To explore the current situation of family planning in
China, questions on this issue were asked. This survey shows that,
of 255 respondents, 51% were female ([58]Mao and Wertz 1997). Most
of them thought that family planning was currently shared by the
couple. This figure is quite similar to that in developed countries
([59]Wertz 1995) and, in part, may reflect socioeconomic changes
that have occurred in China during the past 4 decades.
In 1994, China's population reached 1.2 billion. Now China is
pushing on with its goal of ensuring that the country's population
is =< 1.3 billion by the end of the century and <1.4 billion by
2010. The basic means of reaching the goal are birth control and
the "one couple, one child" policy, which stipulates that each
Chinese couple is legally allowed to have only one child ([60]Wu
1994). Ironically, China has paid a huge socioeconomic price for
ridiculing the theory and practice of birth control and family
planning during the 1950s and 1960s. On the other hand, according
toa national sampling survey in 1987, there were 51.64 million
disabled people (4.9% of the total population) in China. Of these,
54.3% (i.e., 2.66% of the total population) were children. The
majority of these disabilities (64.91%) are due to postnatal
diseases and injuries, whereas 35.09% are due to birth defects and
genetic diseases ([61]Chen and Simeonsson 1993; [62]Ming and Jixiang
1993). One aim of this survey is to investigate geneticists'
attitudes toward the social and legal aspects of genetics. It would
be necessary to ask whether there are laws or regulations in China
that prohibit discrimination against people with disabilities. This
survey shows that more than half of Chinese respondents thought
that there were no such laws or regulations in China, particularly
to protect people with genetic conditions. This may be because,
although the rights of people with disabilities have been protected
constitutionally in China, there are no Chinese laws specifying
whether people with genetic conditions should be protected as
disabled people. This survey also suggests that most Chinese still
regard disabilities as a severe burden for both family and society.
Population and disability issues are universal. As the history of
the Western eugenics movement has shown, these issues are to some
extent likely to produce a social "medium" or environment for the
"birth and growth" of eugenics ([63]Paul 1995).
Historically, cost effectiveness appears to be one of the major
issues concerning Western eugenicists. A typical example of this
wasseen in 1923, when the American Eugenics Society tried to
justify the expense of building enough institutions to house and
separate all the mentally retarded people by calculating that the
$25,000(U.S.) spent on segregating the original mentally retarded
persons for life would have saved the state >$2,000,000 in later
costs. It also added that sterilizing the original mentally retarded
people would have cost <$150 ([64]Larson 1995). Although it is
questionable whether economic calculations would really work in
genetics, some Western geneticists still regard cost effectiveness
as an important factor in genetics services. This is because the
clinical genetics services already available have been shown to be
highly cost effective, mainly because of the high costs of medical
and psychosocial care for the chronically handicapped in Western
countries. For example, in the Netherlands seven regional clinical
genetics centers involved in pre- and postnatal chromosome analysis,
biochemical and DNA diagnosis, and genetic counseling supported by
the national health insurers cost ?1 $50 million/year. As a result
of their combined activities, the birth of 800 - 1600 severely
handicapped children is avoided every year. The costs of their
medical and psychosocial care would have been $500 million - $1
billion during an average life span of 10 years ([65]Galjaard
1997).Moreover, it even has been predicted that the most enforced
codes of medical practice, particularly in genetics services, may
bebased on cost-effectiveness analysis rather than on ethical
considerations for the future ([66]Wertz 1997).
The concept of cost effectiveness may have different meanings
for Chinese geneticists. This is because, unlike Cuba, where a free
health care system including genetic testing and screening covers
the entire population ([67]Heredero 1992), genetics services in
China are not free and are expensive for most Chinese people. For
instance, in 1987 the average income of a Chinese worker in a
factory or university was ?1 $30/mo, whereas the cost of cytogenetic
testing was $6 - $20. On the basis of the population prevalence of
chromosomal diseases in Sichuan province (31.5/100,000) ([68]Zhang et
al. 1991), it is estimated that there would be 346,500 persons with
chromosomal disorders in China at that time (in an overall
population 1.1 billion). If all of these cases were diagnosed
cytogenetically, it would cost $2,000,000 - $7,000,000, which is
equivalent to 69,300 - 231,000 workers' monthly incomes. The costs
of genetics services have increased very rapidly in recent years
because of inflation and health-care reform, although such services
in China are still underdeveloped and fall far short of the needs
of people with genetic disorders.
The prevalence of PKU in the Chinese population is ?1 6/100,000
people ([69]Liu and Zuo 1986). Thus, there would have been ?1 72,000
people with PKU in 1994, when the population was 1.2 billion. A
Chinese study analyzed the cost benefit of newborn screening for
PKU and estimated that the 10-year cost of screening, diagnosis,
medical care, and dietary therapy for each PKU case identified
would be $4,000. If PKU infants were not diagnosed and treated, the
estimated cost of living for one untreated, mentally retarded
individual with a mean life span of 40 years also would be $4,000.
Income loss, special education costs, and inability to contribute
tosociety would cause a total loss of >= $20,000. The long-term
estimated benefits due to early screening, diagnosis, and treatment,
minus the cost of screening and treatment, therefore is ?1 $20,000.
Thus, the ratio of benefit:cost ratio would be ?1 5:1 ([70]Zhou
1995). It is a pity, however, that China is still unable to produce
a low-phenylalanine diet in quantities large enough to provide
adequate therapy for most affected babies ([71]Luo 1988), even
though the PKU test is cheap and newborn screening for PKU seems to
be cost effective in China. All of these actual situations most
likely will lead Chinese thinking to consider the use of other
radical means, such as abortion and sterilization, to reduce the
incidence of PKU ([72]Mao and Wertz 1997).
The word "eugenics," which currently is used more widely in
China than in the West, when directly translated into Chinese, is
"yousheng" and "youyu," which mean "well bear" and "well rear." The
view most widely held by Chinese geneticists is that eugenics
implies processes designed to ensure that children who are born
are, as far as possible, "normal." How to achieve this, in the
context of strict family limitation, has emerged as the most
significant difference, in the approach to medical genetics, between
China and the West ([73]Harper and Harris 1986). This survey was
conducted in 1993, 1 year before China promulgated the [74]Maternal
and Infant Health Care Law (1994). In their comments, almost all
respondents said that the goal of human genetics was "improvement
of the population quality, decrease of the population quantity, and
furtherance of eugenic principles" and agreed that "an important
goal of genetic counseling is to reduce the number of deleterious
genes in the population" ([75]Mao 1997, p. 20). Chinese geneticists
also were extremely pessimistic about directive counseling after
prenatal diagnosis for almost all genetic disorders ([76]Mao and
Wertz 1997). The majority of them would advise voluntary surgical
sterilization for a single blind woman on welfare who had a 50%
risk of blindness in children (88%), for a woman with fragile X who
was living in an institutional setting (73%), and for a cystic
fibrosis carrier-carrier couple (52%) ([77]Mao and Wertz 1997). This
survey reveals that most Chinese geneticists thought that partners
should know their genetic status before marriage, that carriers of
the same defective gene should not marry each other, and that women
should have prenatal diagnosis if medically indicated. These views
were expressed, to some extent, in the Chinese [78]Maternal and
Infant Health Care Law (1994).
The contentious articles of the law are cited as follows
([79]Maternal and Infant Health Care Law 1994):
Article 8. -- The premarital physical checkup shall include the
examination of the following diseases:
1. Genetic diseases of a serious nature;
2. Target infectious diseases;
3. Relevant mental disease.
Article 10. -- Physicians shall, after performing the premarital
physical checkup, explain and give medical advice to both the male
and the female who have been diagnosed with a certain genetic
disease of a serious nature that is considered to be inappropriate
for childbearing from a medical point of view; the two may be
married only if both sides agree to take long-term contraceptive
measures or to get the ligation operation for sterility. However, a
marriage that is forbidden as stipulated by provisions of the
Marriage Law of the People's Republic of China is not included
herein.
Article 16. -- If a physician detects or suspects that a
married couple in their childbearing age suffers from genetic
disease of a serious nature, the physician shall give medical
advice to the couple, and the couple in their childbearing age
shalltake measures in accordance with physician's medical advice.
Article 18. -- The physician shall explain to the married
couple and give them medical advice about termination of pregnancy
if one of the following cases is detected in the prenatal diagnosis:
1. The fetus is suffering from genetic disease of a serious
nature;
2. The fetus has a defect of a serious nature;
3. Continued pregnancy may threaten the life and safety of the
pregnant woman or seriously impair her health because of the
serious disease she suffers from.
In these articles, "genetic diseases of a serious nature"
refers to diseases that are caused congenitally by genetic factors,
that may totally or partially deprive the victim of the ability to
live independently, that are highly possible to recur in
generations to come, and that are considered medically inappropriate
for reproduction; "relevant mental diseases" refers to
schizophrenia, manic-depressive psychosis, and other mental diseases
of a serious nature.
The international opinions on the Chinese law vary. Some
Western geneticists have fiercely criticized the law as an "abuse
of genetics" and a "violation of human rights" ([80]Morton 1998).
Others have said that "in a country where millions of female
children vanish, and many children with developmental abnormalities
are left to die, the law might represent an improvement"
([81]Beardsley 1997, pp. 33 - 34). Frankly speaking, in China too
there is opposition to the law, from some geneticists who did their
training in Western countries. For example, they oppose some
radical measures such as "sterilization of people with IQ less than
60" and the use of term "eugenics" in the early draft of the law.
Interestingly, voices of Chinese geneticists are heard defending the
law. Some examples are "China now has a population of 50 million
handicapped. Without effective action, China will have an even
larger population with serious hereditary diseases and it will
naturally impose a grave social problem as regards their livelihood,
social and cultural development as a whole and even the quality of
the whole population" ([82]"Opportunity for Depth in Chinese Eugenics
Debate" 1998, p. 109); "the law was terribly misinterpreted"; "the
law was needed to supplement the one-child policy and had no
intention of enforcing eugenic aspects" ([83]Takebe 1997, p. 89);
"the law only facilitates practices common for decades in Western
countries, and there is no similarity between what is practiced in
China and Hitler's concept of eugenics" ([84]Maddox and Swinbanks
1995, p. 549). The survey results do, however, suggest that social,
economic, and cultural differences most likely will give rise to a
disagreement between China and the West, on the issue of eugenics.
Public education in genetics is thought to be an effective
approach to reduce the incidence of genetic diseases, although it
needs a huge and long-term investment from the government
([85]Harper and Clarke 1997). This survey suggests that at least
half of Chinese geneticists appear to realize the importance of the
issue. On the other hand, genetics education in China has not
covered any ethical issues yet ([86]McCaffrey 1989). One ethicist
who advised the drafting of the Chinese law admitted that bioethics
has just started to be discussed and was not considered seriously
when the law was drafted ([87]Takebe 1997). This survey, however,
reveals that most Chinese geneticists think that ethical guidelines
are necessary for the improvement of genetics services in China.
Although the Ministry of Public Health of China published a brief
ethical code for medical professionals in 1988 ([88]Qiu 1993), at
the moment there are not any ethical guidelines for genetics
services in China. A group of experts from both developed and
developing countries, including China, sponsored by the World Health
Organization, has drafted international guidelines on ethical issues
in medical genetics and on the provision of genetics services. The
guidelines not only provide ethical principles for genetics services
and research but also emphasize respect for cultural, social, and
religious diversity ([89]World Health Organization 1998). It
therefore is expected that the guidelines will be introduced into
China and will serve as a framework for Chinese geneticists in
their practice and research. Perhaps in this practical way, such
guidelines could bridge the social and cultural gap between Chinese
geneticists and their Western counterparts, could help to clarify
the nature of eugenics, and could allow a consensus on the ethical,
legal, and social issues of genetics in the future.
Acknowledgments
I am deeply indebted to our Chinese colleagues who
participatedin and supported this survey. I wish to thank Profs.
Dorothy C. Wertz (Shriver Center for Mental Retardation) and John
C. Fletcher (University of Virginia Medical Center), for their
excellent organization of the international survey in 37 countries,
and to Prof. Renzong Qiu (Chinese Academy of Social Sciences), for
providing eastern China data. I am grateful to Prof. Peter S.
Harper and Dr. Angus J. Clarke (University of Wales College of
Medicine, United Kingdom), for their face-to-face discussion of my
work with me. I also want to thank Sir Walter Bodmer (Oxford
University) and Profs. Martin Bobrow (Cambridge University) and
Newton E. Morton (University of Southampton), for their comments on
an earlier draft of this article. The fieldwork for this survey was
funded by grant R01-HG00540-02 from the Ethical, Legal, and Social
Implications Branch of the National Center for Human Genome
Research, National Institutes of Health.
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