Page 17 - Genomic Medicine in Emerging Economies

6 CHAPTER 1: Genomic Medicine in Developing and Emerging Economies

3% of global genome-wide association studies—which link genetic traits to
patterns in health, disease, or drug tolerance—has been performed on Africans,
compared with 81% on people of European ancestry (Nordling, 2017).

Asia
One of the challenges described in this book regarding the implementation
of genomic technologies in Asia is the financial coverage of potential clinical
genomic tests. Key questions such us who pays for the tests and who estab-
lishes the test pricing have not been addressed in most of Asian countries.
Countries like Sri Lanka are developing and using genomic tests, but their
national health services do not reimburse the cost of genomic testing and there
is no coverage for genomic tests by insurance companies (see Chapter 2). As
such, patients have had to bear the burden of financing these tests out of their
own pockets. A particularly important task, aside from developing research
capacity, has been to convince national governments that genomic medicine is
important and that allocating funding for genomic medicine infrastructure is
vital for providing affordable genomic medicine services (Sirisena et al., 2016).
Another important challenge has been the capacity to train a genomics work-
force with expertise in integrating genomic data into clinical delivery services
and provides genomic education for both clinicians and patients. As in many
other jurisdictions, including developed countries, Sri Lanka has encountered
many barriers when trying to implement genomics in the clinic. Some of these
include setting up regulatory frameworks to oversee the ethical conduct of
genomic research, training genomic scientists, and providing access to both
data and genetic resources, to provide avenues for integration of genomic data
into clinical practice (see Chapter 2). Issues around data management have
been particularly challenging, in particular the sharing of de-identified data to
foster multidisciplinary collaborations for genomics research and services and
the building of public trust and confidence in genomics research, genetic data
sharing, and contribution of samples and data to biobanks (Pang, 2013).
Another example discussed in this book, as far as implementation of genomic
medicine in Asia is concerned, is the genomics-related public health programs
and services in China (Chapter 3), in particular the role in Chinese health
care played by prenatal diagnosis, newborn screening, and genetic testing for
rare disease (Zheng et al., 2010). China has developed several initiatives in
these areas. Some of the challenges described in this book are the absence
of genomic education of health care providers and the lack of availability of
genetic counselors. Other interesting aspects are the concepts around the inte-
gration and interaction of genomics and traditional Chinese medicine (Wang
and Chen, 2013). Some examples discussed are the application of genomics
theory to support acupuncture practice and the application of genomic medi-
cine to investigate herb-drug interactions. Finally, the opening of the China