Browsing by Author "Chandrasekharan, Subhashini"

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Open Access
Augmenting Research on South Asian and South Asian Women's Health in America: The Case for Data Disaggregation
(2023-04-19) Meesa, Priyanka
South Asian Americans are a rapidly growing ethnic group in the United States. They experience an array of health disparities that are not well-understood or addressed partially due to a lack of research on the health of this population. There are many factors that contribute to this paucity of research, one is the lack of data disaggregation within the Asian demographic category in U.S. health research datasets. Data disaggregation allows a finding to be analyzed in more granular way. This may help uncover differences that were invisible in the aggregated data. In the context of this paper, data on Asians is often aggregated into one “Asian” category, so it cannot be broken down into East, South, etc. Asian, making the health differences of these populations challenging to identify. This paper provides a deeper understanding of the complex issues surrounding data disaggregation (scientific, technical, regulatory, and ethical), from the perspectives of thought-leaders and subject matter experts informed by their real-world experiences of conducting precision and biomedical research. In this study, participants concurred that data disaggregation is essential to understanding South Asian American health disparities and that aggregation can be harmful. They also noted barriers to and risks of disaggregation. These barriers and risks can start to be addressed with increased funding and researcher awareness of South Asian health disparities. Furthermore, informants highlighted methodological challenges, such as defining what it means to be South Asian and capturing culture in data. This is especially important for understanding the health of women in the community, as South Asians have gendered practices and health behaviors as a result of their cultural and religious beliefs. Participants agreed that country of origin is a good starting point for disaggregation, but more information, such as immigrant status, acculturation, and religion, is important to truly understand health and develop interventions. More research is needed to 3 understand perspectives of community partners, members of the South Asian American community, policymakers, and research funders on augmenting research on South Asian American health to address health disparities. Increased data disaggregation facilitated by greater funding and awareness among those conducting and participating in research is an important first step to improve the ability of researchers to identify the health needs or outcomes specific to the South Asian population in the United States.
Open Access
Harm, hype and evidence: ELSI research and policy guidance.
(Genome Med, 2013) Caulfield, Timothy; Chandrasekharan, Subhashini; Joly, Yann; Cook-Deegan, Robert
There has been much investment in research on the ethical, legal and social issues (ELSI) associated with genetic and genomic research. This research should inform the development of the relevant policy. So far, much of the relevant policy - such as in the areas of patents, genetic testing and genetic discrimination - seems to be informed more by speculation of harm and anecdote than by available evidence. Although a quest for evidence cannot always be allowed to delay policy choice, it seems axiomatic to us that policy options are improved by the incorporation of evidence.
Open Access
Preliminary perspectives on DNA collection in anti-human trafficking efforts.
(Recent advances in DNA & gene sequences, 2014-01) Katsanis, Sara H; Kim, Joyce; Minear, Mollie A; Chandrasekharan, Subhashini; Wagner, Jennifer K
Forensic DNA methodologies have potential applications in the investigation of human trafficking cases. DNA and relationship testing may be useful for confirmation of biological relationship claims in immigration, identification of trafficked individuals who are missing persons, and family reunification of displaced individuals after mass disasters and conflicts. As these applications rely on the collection of DNA from non-criminals and potentially vulnerable individuals, questions arise as to how to address the ethical challenges of collection, security, and privacy of collected samples and DNA profiles. We administered a survey targeted to victims' advocates to gain preliminary understanding of perspectives regarding human trafficking definitions, DNA and sex workers, and perceived trust of authorities potentially involved in DNA collection. We asked respondents to consider the use of DNA for investigating adoption fraud, sex trafficking, and post-conflict child soldier cases. We found some key differences in perspectives on defining what qualifies as "trafficking." When we varied terminology between "sex worker" and "sex trafficking victim" we detected differences in perception on which authorities can be trusted. Respondents were supportive of the hypothetical models proposed to collect DNA. Most were favorable of DNA specimens being controlled by an authority outside of law enforcement. Participants voiced concerns focused on privacy, misuse of DNA samples and data, unintentional harms, data security, and infrastructure. These preliminary data indicate that while there is perceived value in programs to use DNA for investigating cases of human trafficking, these programs may need to consider levels of trust in authorities as their logistics are developed and implemented.
Open Access
Understanding Antenatal Genetics Services in Sri Lanka: Current Landscape of Screening and Diagnostic Services and Contextual Factors Influencing Their Availability and Uptake
(2016) Logan, Jenae Elaine
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.