Genetic services in low resource situations
Genetic services are not a component of health services in most low-income countries. In the noise of yearly occurrence of preventable 1 million neonatal deaths, 1 million stillborns, half-million tuberculosis deaths, whispers about genetic diseases are hardly hearable in India. Perpetuity of genetic diseases, their economic burden, debilitating life-long sufferings, etc., get brushed aside under wrong conceptions and pre-fixed notions of bureaucrats and bureaucrat-physicians. Majority of physician-bureaucrats, having had no exposure to genetic diseases during their training, neither appreciate their quantum nor long-term implications. They consider genetic diseases as extremely rare, expensive to detect, diagnose and treat, and thus need no resource allocation from meagre funds of health services. Such allocations are considered “luxury” and not “essential”.
In a country of over a billion, where unqualified midwives deliver significant proportion of births at home and where >90% of States’ health budgets are spent on salaries, introduction of genetic services for >50 million affected individuals is a gigantic task. Genetic services can be innovatively integrated into existing hierarchy of primary, secondary and tertiary health services. Immense ethnic, social and economic diversity necessitate such integration to be designed in harmony with local cultures. Success would lie in educating people for whom a child with genetic disease is God’s curse - with women bearing the onus. Awareness and women empowerment could begin at primary level by involving NGOs and self-support groups. At secondary level, industry could be willing partner as diagnostics is big business. For simultaneous capacity building, needed at tertiary level, Govt, NGOs, WHO, EU, UNESCO can contribute effectively. Collaborating developed countries too gain as their scientists access large diverse genetic pool; and for their Pharma, “orphan medicines” for genetic diseases - no longer remain “orphan”.