My Experience Working with Sickle Cell

One of my favorite aspects of Pitt’s program is that it encourages us to hold a relevant work position throughout our two years here. Having spent some time “in the real world” before making the plunge back into school, I came to appreciate that there are skills and lessons best learned outside of the classroom. Ultimately, Pitt is training us to excel as genetic counselors. Our work positions provide an additional avenue to build vital professional skills.

Children's Hospital of Pittsburgh 

As a dual degree (MS/MPH) student, I am fortunate to have found a work position with a similar dual nature. Each week, I split my time between the Pediatric Sickle Cell Department at Children’s Hospital of Pittsburgh (CHP) and the Children’s Sickle Cell Foundation (CSCF). These two groups work collaboratively to provide comprehensive care to children with sickle cell disease and to their families. It is a true model of public health, addressing the physical, emotional, and social well-being of this community. Through working with both teams, I have learned ways to address common issues such as transportation to appointments and communication with schools about missed days due to illness. These are things that may get overlooked by health care providers but are real impediments to an individual’s management of their health.

In my student worker position at CHP, I am able to shadow appointments during clinic days. This augments the already robust clinical experience that Pitt provides. Through shadowing the Sickle Cell team, I get to learn about clinical management and genetic counseling for hemoglobinopathies (genetic disorders that are caused by variant forms of hemoglobin, the protein that carries oxygen around in our blood). My supervisor at the clinic, Dr. Hillery, encourages me to take advantage of all educational opportunities. In the spring, this included a talk on sickle cell pain by a visiting clinician, followed by a more intimate Q&A session. I also get to develop patient educational tools, specifically fact sheets about various hemoglobinopathies. Additionally, through my help with managing the Sickle Cell database, I have learned how to navigate the infamous Electronic Medical Record system. This was one less thing to learn when rotations started! Finally, you cannot be in Pitt’s Graduate School of Public Health without learning about Newborn Screening. My position provides me first-hand experience with this public health program through sending biweekly letters to parents whose babies have screened positive for sickle cell trait. We are currently evaluating the letter that western Pennsylvania sends out for this purpose, and my feedback has contributed to the revision process. I have been able to incorporate this into my thesis research, which will examine the impact of the notification letter on families’ understanding of sickle cell trait.  As you may be able to tell, there is no shortage of opportunities for learning at the clinic alone!

Newborn Screening

My second role is as a program assistant with CSCF. Here, I work with a team of Community Health Workers to coordinate activities and services for those within the sickle cell community. We offer programs such as swim lessons and math tutoring on the weekends, trips to plays, museums, and amusement parks throughout the year, and special holiday events. One of the highlights of my year has been our Season2Give event where the children were able to pick out gifts for their siblings, which we as “Santa’s Elves” wrapped. All these events provide a wonderful opportunity to get to know families in a context beyond the clinic. CSCF additionally performs a patient advocacy role, which includes assisting with the development of Individualized Educational Programs and providing assistance with meals and transportation to families when needed. As a future genetic counselor, I am so appreciative to be learning how to navigate the logistics of these crucial support services.

Time is one of your most precious resources in graduate school. While work can sometimes seem like one more thing to try to cram into an already packed schedule, my work position has provided me with some of the most valuable (and fun!) experiences of graduate school. As I continue working towards my career as a genetic counselor, I am excited to see how many other ways my work with this wonderful team can help me build my professional toolkit.

Caitlin Russell 

Deciding on the Dual Degree

While preparing for my genetic counseling graduate work, one of my favorite experiences was working with a local organization, Jewish Young Professionals, to set up a night that focused on genetics. We arranged for a certified genetic counselor to speak with a group of approximately 20 individuals aged 20-40, about a variety of genetic issues that might be important for them to know at different stages of life. Activities like this, while not always an everyday part of a genetic counselor's professional life, are important to providing basic education to the community and can be valuable in increasing awareness of relevant genetic issues. While I love individual interactions, and look forward to clinical genetic counseling, I also feel that it is important to think about the impact of genetics on population health (for example, what population screening measures are appropriate and why). Given this perspective, the addition of the MPH degree in Public Health Genetics just made sense.

        I didn't always know I wanted to be a genetic counselor. I didn't even know what genetic counseling was until a few years ago but experiences like the aforementioned one helped solidify my interest in getting involved in healthcare, specifically genetic counseling. I started the process of applying to genetic counseling training programs and continued to be passionate about people and their health. When I got into the genetic counseling program of my dreams, the option of entering the dual degree program (MS in Genetic Counseling/MPH in Public Health Genetics) seemed intriguing. I started to ask a number of questions: Was it right for me? I already had a different graduate degree, in a field I wasn't in, so what could the addition of an MPH do for me?  

        When considering the dual degree, I knew that I could see the benefit, but was it enough when weighed against the cost and time commitment? To be honest, I spent a good deal of time pondering practical issues.  I thought about what the addition of another degree could provide.  Maybe it could help me when I apply for jobs.  Maybe it would give me a bargaining chip for a slightly better salary.  While this information is important to keep in mind, it missed the larger picture of the relevancy of a dual degree to genetic counseling education and practice.  I had great conversations with the program directors as well as the faculty at the University of Pittsburgh, who helped focus my internal reflections.  I also had an informative discussion with an alumnus who graduated from the dual degree program and an alumnus who did not get the dual degree but who has recently started an educational program in public health.  They both shared with me how their clinical practice has been influenced by their public health education.

University of Pittsburgh Public Health

As a result of all these conversations and considerations, when I thought of my future as a genetic counselor, it became clear that I wanted the education as a public health professional to inform my work as a genetics professional within the larger context of our current healthcare system.
Much of genetic counseling work is intertwined with public health, and at times, it can be hard to separate the two. Some experience in public health is intrinsic to the University of Pittsburgh genetic counseling experience, but it became clear that the addition of the dual degree would help me better understand and reframe some of the debates we are currently having about genetics in a new and helpful way. The increased depth and breadth of experience provided by the MPH would also help me improve my ability to communicate with and care for patients in the clinical setting. For these reasons, I started my first dual degree class this semester.

-Natasha Robin Berman

Class of 2019