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<p>Background: Too little information is available on Sri Lanka’s current capacity
to provide community genetic services—antenatal genetic services in particular—to
understand whether building that capacity could further improve and reduce disparity
in maternal and child health. This qualitative research project seeks to gather information
on congenital disorders, routine antenatal care, and the current state of antenatal
screening testing services within that routine antenatal to assess the feasibility
of and the need for scaling up antenatal genetics services in Sri Lanka. Methods:
Nineteen key informant (KI) interviews were conducted with stakeholders in antenatal
care and genetic services. Seven focus group discussions were held with a total of
56 Public Health Midwives (PHMs), the health workers responsible for antenatal care
at the field level. Transcripts for all interviews and FGDs were analyzed for key
themes, and themes were categorized to address the specific aims of the project.
Results: Antenatal genetic services play a minor role in antenatal care, with screening
and diagnostic procedures available in the private sector and paid for out-of-pocket.
KIs and PHMs expect that demand for antenatal genetic services will increase as patients’
purchasing power and knowledge grow but note that prohibitive abortion laws limit
the ability of patients to act on test results. Genetic services compete for limited
financial and human resources in the free public health system, and inadequate information
on the prevalence of congenital disorders limits the ability to understand whether
funding for services related to those disorders should be increased. A number of alternatives
to scaling up antenatal genetic services within the free health system might be better
suited to the Sri Lankan structural and social context. Conclusions: Scaling up antenatal
genetic services within the public health system is not feasible in the current financial,
legal, and human resource context. Yet current availability and utilization patterns
contribute to regional and economic disparities, suggesting that stasis will not bring
continued improvements in maternal and child health. More information on the burden
of congenital disorders is necessary to fully understand if and how antenatal genetic
service availability should be increased in Sri Lanka, but even before that information
is gathered, examination of policies for patient referral, termination of pregnancy,
and government support for individuals with genetic disease are steps that might bring
extend improvements and reduce disparity in maternal and child health.</p>
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