Mubashra Inam
According to the demographic experts, 14.5% of the total population of Pakistan suffers from the genetic disorders and this percentage is rapidly increasing. The most common genetic disorders in Pakistan are Diabetes, Thalassemia, Down’s syndrome, color blindness, deafness, Breast Cancer, Hemophilia, Sickle Cell Anemia and cardiovascular disorders. Occurrence of these disorders is mostly attributed to the consanguineous marriages.Pakistan has the highest rate of consanguineous marriages in the Middle East with the rate of 62%. Unfortunately, it can also be attributed to the lack of genetic counseling in Pakistan. According to a report by WHO, there are 48 collaborative centers related to global health genomics worldwide, out of which 36% are in developing countries, but none of these are in Pakistan nor they are working on any issues directly related to Pakistan. As of present, there are only a few institutes that offer genetic services in Pakistan such as National Institute of Biotechnology and Genetic Engineering (NIBGE), Punjab University Center of Excellence in Molecular Biology (CEMB), School of Biological Sciences (SBS) along with the hospitals such as Shaukat Khanum Cancer Hospital, Agha Khan University Hospital and Institute of Nuclear Medicine and Oncology. These Centers are well-reputed for their genetic services which include pre-natal and early diagnosis of genetic abnormalities, carrier screening, genetic counseling and molecular diagnosis of particular diseases. However, this number of such centers and institutes is incredibly low. Moreover, almost 90% of the population is unaware that such services even exist.
As far as gene therapy is concerned, it becomes more difficult if the local masses are not even aware of the basic knowledge of genetics. More than 2600 gene therapy trials have been conducted worldwide so far. Although researchers and medical specialists in Pakistan are aware of all the gene therapy studies but this knowledge has been theoretical so far as no clinical trials have been conducted so far. There may be various reasons behind it such as 80 % of the urban masses are unaware of the genetic basis of the diseases, causes and occurrence of genetic abnormalities that is attributed to the low literacy rate in Pakistan.Sadly, genetic counseling is considered as a taboo among the masses and they are against this idea. Therefore, the risk of genetic disorders prevails. Moreover, Pakistan has a very low ratio of Master’s level genetic counselors. Genetic counseling needs to be prioritized along with other pre-natal monitoring and counseling activities. Moreover, gene therapy trials require a large budget as it is an expensive therapy. A single intravenous infusion costs millions of dollars. Since the trials are conducted on a number of people, a large sum is required which is difficult in the developing countries that are economically unstable such as Pakistan. Similarly, developing countries have high rate of occurrence of infectious diseases due to which most of the budget that is set for health sector is used up for such occurrences.
According to the National Biotechnology Commission, there are only 27 institutes all over Pakistan that offer courses in biotechnology and genetics. This low number ratio of research institutes is responsible for the impracticability of gene therapy in Pakistan.Consequent to the low number of research institutes, the research staff is insufficient for the feasibility of conducting gene therapy in Pakistan. Even if the students opting for biotechnology and genetic career complete their degrees in the respective fields, most of them change their career to office work or lectureship because of the lack of research opportunities and research facilities. Another major hindrance in the path of gene therapy is the lack of implementation of research findings in healthcare systems. The higher ups of healthcare sector are not willing to introduce new technologies and implementing research findings in the system and on commercial grounds due to the lack of funding and low budget. (0.91% of GDP).
Gene therapy serves as a potential experimental technique for the treatment and cure of the incurable genetic diseases. Many successful trials of gene therapy have been conducted worldwide so far. However, this technique suffers various hindrances in its practicability when it comes to the developing and economically suffering countries such as Pakistan. Pakistan is the country with rapidly growing population and is facing an increasing number of genetic disorders such as Thalassemia, Hemophilia, Cancer, Diabetes and cardiovascular disorders. Although conventional therapies for these disorders are available, there is no existing cure. Gene therapy can be the ray of hope for the patients with these disorders. There are certain limitations for the feasibility of gene therapy in Pakistan such as low budget and lack of funding, inadequate research institutes, low ratio of genetic research personnel, and lack of awareness among public. These issues need to be addressed with consideration to make gene therapy and other genetic services practicable in Pakistan which will not only benefit the researchers in terms of more research opportunities but also thousands of patients in Pakistan by increasing their survival opportunities.
