Page 45 - Genomic Medicine in Emerging Economies

34 CHAPTER 3: Genomics and Public Health: China’s Perspective

in Hunan Province and opened in 1991. It is the only designated organization
to authenticate the identification of novel abnormal chromosomal karyotypes
in China. This laboratory has been maintaining the database of the family
collection of genetic diseases in China and has been collecting novel human
abnormal chromosomal karyotypes identified in China for the past 30 years.
The database assembled 2144 novel human abnormal karyotypes identified
in China (excluding those from Tibet, Taiwan, Hong Kong, and Macau) and
their related disease information. The karyotypes include 4510 chromosome
breakages and 57 balanced translocations between the X chromosome and
autosomes. The database also provides statistical information, chromosome
breakage frequencies, abnormal karyotype descriptions, and related clinical
information. Some tests are paid by insurance in advanced cities (e.g., test
on human papilloma virus/HPV in Beijing), but, again, most test are paid by
patients as out-of-pocket expenses.

Projects Related With the Human Genome in China
In past decades China has proposed or entered several projects related to the
human genome. The earliest project started in 1991 when the Human Genome
Diversity Project was generated. The Chinese Human Genome Diversity Project
has collected cell lines from the 56 Chinese ethnic groups and tested the DNA
samples. In 1999 China entered the International Human Genome Project and
undertook the sequencing of 1% of the human genome working draft (i.e., the
region 3pter-D3S3610 containing 30 million bp). China is also responsible
for about 10% of the International HapMap Project, which was launched in
2002 jointly by the United States, the United Kingdom, Japan, China, and
Canada. This project aimed to guide the design and analysis of genetic associa-
tion studies, shed light on structural variation and recombination, and identify
loci that have been subjected to natural selection during human evolution. In
January 2008 the “Yanhuang” (Emperor Yan) project was established by the
Beijing Genomics Institute, which aimed to sequence the entire genome of 100
Chinese individuals over a 3-year period.

Genetics Education
Genetics education in China started fairly late because of the underdeveloped
education policies of the Cultural Revolution (1966–76). In the 1980s colleges
began to offer genetics courses, but only the basics of human genetics were
taught in regular colleges and universities. Now, the main form of Chinese
genetics education for the public is genetic counseling in clinics. Since the law
on maternal and infant health was passed in 1994, genetic counseling in clin-
ics has been developed in advanced hospitals, mainly as a unit attached to the
department of gynecology and obstetrics. However, compared with developed
countries, there are still many problems associated with genetic counseling
in China (Zhao et al., 2014). First, genetic counseling clinics are almost all