A Glimpse into My ELSI Journey

In this Trainee Spotlight article, Sheethal Jose, a doctoral student at Johns Hopkins Bloomberg School of Public Health and the Berman Institute of Bioethics shares with us her research interests, how she got involved with ELSIhub, and helped plan our February ELSI Friday Forum, Genomic Imaginaries: Sparking Dialogue between ELSI and Literary Studies.

I have always been fascinated with genomics and its impact on people’s health. During my time at the University of Virginia, I was involved in coursework and research projects that focused on the genomic sciences while pursuing my degrees in biology and politics. However, it was my time as a program analyst at the National Human Genome Research Institute (NHGRI) that exposed me to the world of ELSI research. I worked on two main extramural projects: 1) Electronic Medical Records and Genomics (eMERGE) Network and 2) Knockout Mouse Program (KOMP)/International Mouse Phenotyping Consortium (IMPC) and both these consortia showed how interdisciplinary the field of genomics was. I discovered that higher education in genomics can go beyond bench research and decided to pursue a doctoral degree in ELSI research and public health policy. 

I am currently a doctoral student in Bioethics and Health Policy at Johns Hopkins University. I am also a trainee at the Johns Hopkins Center for Bridging Infectious Disease, Genomics, and Society (BRIDGES) which is a Center for Excellence in ELSI Research (CEER) supported by the NHGRI focused on anticipating the ELSI issues that arise when using genomic information for the prevention and control of infectious diseases. As such, I have developed a strong interest in studying the ELSI issues at the intersections of genomic medicine implementation, public health policy, and infectious diseases. My dissertation proposal is focused on exploring health professionals’ perspectives on the ethical acceptability of using host genomic information (HGI) in the clinical care and public health control of COVID-19 and understanding how the use of genomics in the infectious disease context impacts concerns of genetic determinism and (re-)biologization of race using both empirical and normative approaches. I am also working on another ELSI project that studies the long-term impact of presymptomatic genetic testing for Huntington’s disease (HD) on individuals who are at risk for HD and their families.  

Beyond my research endeavors at Johns Hopkins, I have had the opportunity to become involved in the broader ELSI community through ELSIhub. My first experience with ELSIhub was being one of the Collection Editors for the February 2021 ELSIhub Collections, “ELSI at the Intersection of Genomics and Infectious Disease.” I have also attended several of the ELSI Friday Forums (EFF) and found them incredibly helpful, prompting me to become a member of the EFF planning committee. Recently, I helped organize the February EFF focused on how the ELSI community can engage with the humanities field, specifically literary studies scholars. The moderator for this EFF, Dr. Rebecca Wilbanks, and I have worked together for the past two years on the BRIDGES project. I was delighted when she agreed to moderate the session as her background in literature and science along with the panelists, Drs. Choksey and Larkin, will provide valuable insight for the ELSI community. I have also been an active participant of the ELSI TraineeHub planning committee where I helped with the initial stages of setting up the TraineeHub resources and discussed ideas of how we can better cater to the needs of ELSI trainees as well as expand our outreach to trainees beyond the traditional ELSI community.

Are you a trainee or early career scholar with an interest in ELSI issues?  Learn more about what ELSIhub can offer and how to participate at TraineeHub!