Thursday, June 22, 2023

With A Little Help From My Friends: My Interdisciplinary Student Experience at Pitt - Saad Akhtar

One of my favorite aspects of being a genetic counseling student here at Pitt is being under the umbrella of the School of Public Health and getting to interact with students and professors in the many other programs offered here. As I started my time at Pitt as an MPH student and later transitioning into the dual degree program, I had no idea how invaluable having this access to other disciplines would be. It has not only broadened my perspective of different health issues that affect patients beyond the clinic but has also made me appreciate the different roles that other students and professionals have in ensuring the best health outcomes for patients. I know this will be especially important as I begin my rotations, as I have seen from my prior support roles how often genetic counselors interact with other medical professionals in our profession and how vital it is to learn to work with others outside of our field.

As a dual degree student, how our work as genetic counselors falls into the broader scope of Public Health is constantly on my mind. In my first year at Pitt prior to officially joining the genetic counseling program, I had the benefit of taking several classes that focused on aspects of health outside the clinical and research spaces we tend to associate it with. Two of these courses, Social and Behavioral Sciences in Public Health and Introduction to Community Health, particularly have had an impact on me and my time here as a student. Social and Behavioral Health Sciences focused on issues of health equity and access, which have always been a passion of mine. But, it also taught me about the importance of qualitative research and how the experiences of people and patients can be just as vital as the statistics and numbers that can represent them in studies. This is extremely relevant to genetic counseling, as the psychosocial aspect of genetic testing and the implications it can have on our patients' lives is the basis of our field. Community Health taught me how to build trust in communities as a medical professional and to think about how health issues can affect people in various ways on a local scale and beyond. In both of these courses, I had a chance to work with public health students studying areas such as Epidemiology, Health Policy and Management, and Behavioral and Community Health Sciences, just to name a few. It opened my eyes to the various ways people in different fields could approach tackling issues we talked about in class and how by working together, we could each bring something unique to the table.

My work in these classes also influenced my practicum experience as part of Bridging the Gaps, which is an internship provided by Pitt. In Bridging the Gaps, students from different fields work together over the summer to join various organizations across the city working to help underserved individuals and communities. As part of my work, I had the pleasure of working with a nursing student at an anti-violence summer camp program for the community of Beltzhoover. Though neither of us had much experience directly working with children or underserved communities, by the end of the summer we both felt like we had learned a lot about working with these individuals, not only from each other but from members of the community of Beltzhoover as well. It is one thing to learn about the social determinants of health in class, but it’s an entirely different experience to see how they affect actual people in communities just twenty minutes from where we study. Besides my own work in Bridging the Gaps, we also got a chance to work with other students studying things such as Social Work, Dentistry, Nursing, and Pharmacy, as well as meet with leaders from organizations doing vital work across the city of Pittsburgh. Many of the people I worked with had very little understanding of genetic counseling as a field, so I had the opportunity to teach others about the work we do in my role while learning from them as well. Through this experience, I have become aware of so many resources and organizations that work to help those in need that I had no knowledge of prior, and I know this knowledge will be useful as a genetic counselor. Part of our job is to be able to direct our patients to resources they need, and as medical professionals, it's our duty to be advocates for our patients. I truly believe our role in our patients’ lives does not begin and end during our time in the clinic with them. Through my experiences, I have a much better idea of how I can address their needs beyond the clinic in the future.

In thinking about interdisciplinary work, I also want to highlight my experience being part of the department of Human Genetics. One thing I love about our department is how, even though our individual focuses can differ from program to program, there is a strong sense of community and uplifting each other’s work. We, of course, have students, professors, and other professionals in our department who primarily focus on genetics research, but we have individuals studying bioinformatics, public health genetics, and of course, genetic counseling as well. As part of our curriculum, we take many of the same courses and get to learn from individuals who are experts in their particular fields. As a result, the way we think about genetics is unique and we see how our work can affect individuals on every level, from a societal perspective all the way down to the molecules that make us who we are.

From my own experience, I can say that making friends in other programs has benefited me enormously as a student. Forming a study group with students in the MS/PhD programs in our Molecular Basis class in my first semester helped me so much as I adjusted to coming back to academia after a long time off. In our statistical methods and bioinformatics courses, having classmates who had prior experience in those fields who I could rely on for help if I needed it was invaluable as well. Some of those classmates have become some of my closest friends here in Pittsburgh and it’s been a true pleasure getting to know them both in and outside the classroom.

If I can end this post with some advice, to any future incoming students or applicants thinking about joining our program, take some inspiration from the Pittsburgh legend Fred Rogers and learn to be a “good neighbor” to those around you. The interdisciplinary community we have developed at Pitt can be your biggest asset in your time here if you’re willing to take advantage of it. Nearly everyone I have had the opportunity to interact with has positively impacted my time here, and I’m deeply grateful to be part of a program that emphasizes collaboration with individuals both in and outside our field.

Friday, June 2, 2023

"If You Knew Everything, You Wouldn't Be Here" - Nicole Weise

Going into graduate school, I knew there was a lot I didn’t know about genetic counseling, and I was eager to get started on my training. Our first semester was inundated with information about Hardy-Weinberg equilibrium, lysosomal storage disorders, and risk assessment (who knew Bayes would not be the hardest part about genetic counseling?). As we finished out the spring semester, the amount of information we’ve absorbed on hereditary cancer predisposition syndromes, genetic testing methodologies, and psychosocial interventions is enough to make one’s head spin. Some days it’s hard to keep up with everything, and even still, I know there is so much more to take in. This is not surprising: we signed up to be lifelong learners.

Despite knowing so little about the actual genetics behind genetic counseling, I thought I had a very good understanding of the basic principles of genetic counseling going into graduate school. Patient autonomy. Non-directiveness. Unconditional positive regard. Self-explanatory, no nuance. Alas, I should have known – it could never be that simple.

On Thursday afternoons from 1:00 – 1:50pm, we had the opportunity to take Ethical Issues in Clinical and Public Health Genetics, taught by Drs. Robin Grubs and Michael Deem. This class challenged my understanding of what I knew to be the basic tenets of genetic counseling. One of our first, and most impactful, lectures was on non-directiveness. Non-directiveness is perhaps one of the main defining features of genetic counseling, born out of the renunciation of eugenics. I had always thought non-directiveness was straightforward: genetic counselors have a duty to provide patients with clear and unbiased information so that patients can make fully informed decisions, free from coercion. As a result, non-directiveness on the part of the genetic counselor promotes patient autonomy and self-directiveness. But in talking about non-directiveness in practice, we were asked: can we take a truly non-directive approach in all situations? If a family does not provide a child with PKU a diet free from phenylalanine, can we remain non-directive? If cascade testing can identify a germline pathogenic variant that increases a person’s cancer risk but the proband does not want to communicate their results to their family, can we remain non-directive? At what point, if ever, should the genetic counselor step in and be even a little bit directive?

In addition to non-directiveness, this course provided us the forum to discuss relevant ethical topics in genetic counseling such as informed consent, duty to disclose, secondary and incidental findings, and consumer-driven genetic testing. I was pleased that we also discussed ethical issues raised by non-invasive prenatal screening (NIPS), a topic that is of personal interest for me. Given the non-invasive nature of NIPS, it may be increasingly seen as a standard part of prenatal care. Some, however, argue that this may diminish the informed consent process and even stigmatize a person’s choice not to pursue NIPS. Additionally, greater access to NIPS raises the possibility that it may result in fewer individuals being born with genetic conditions, and subsequently, fewer resources being invested in their health and equity in society. NIPS, therefore, has the potential to further widen disparities between abled and disabled individuals. How can we as future genetic counselors provide the best care possible for our patients when these ethical implications arise? How can we incorporate our understanding of ethical challenges into practice while maintaining a commitment towards patient autonomy and choice?

The truth is, there is not always a one-size-fits-all answer to such ethical questions. Ethics has a way of challenging our perceptions of what we ought to do, and what we ought not to do. The value of studying ethics is that we consider viewpoints that are not our own and that we recognize that not every dilemma has a right answer. It allows us to set our rigid views of the world aside and consider that things are not always as straightforward as they seem. The study of ethics has a critical role in our training: the field of genetic counseling is rapidly evolving, and we should expect ethical issues to arise and be prepared to face them head on.