Winter 2023 Newsletter

 

Newsletter with article on the history of the GCGP

Dr. Huether's Obituary

Tributes to Dr. Huether

Huether Endowment 

ABRCMS Information

Online Course Information

Elective Rotation: Eye Genetics

 

When I was first applying to genetic counseling programs, one of the things about Cincinnati’s program was the ability to do elective rotations for special interests. Having worked in an ophthalmology practice prior to GC school, I had already begun to wonder if there was such thing as studying eye genetics.

It turns out, all I needed to do was ask. When I expressed interest, I was immediately put into contact with some very enthusiastic supervisors. Diana Brightman, PhD, MS, CGC is our resident eye GC, and Dr. Ginny Utz is a pediatric ophthalmologist with specialized knowledge in eye genetics. Between the two of them, I was afforded some really wonderful opportunities.

Firstly, I observed or participated in all the eye genetics clinics that I could. Prepping for cases became twice as interesting, and because I was seeing both the ophthalmology and genetics visits, I had the privilege of seeing some patients more than once and understanding of the type of multidisciplinary care that patients with low vision receive. Another ophthalmologist at Cincinnati Children’s, Dr. Robert Sisk, is heavily involved with patients undergoing gene therapy. Eye genetics is a growing subspecialty because of increased interest in and viability for gene therapy, and I was able to observe many patients at various stages of treatment. (And let me tell you, it was a delight to hear so many of them report improvements in their vision!) Additionally, I observed offsite at the Low Vision Clinic at Clovernook Center for the Blind and Visually Impaired. Here, patients are evaluated for their everyday visual needs and given access to adaptive technology and functional recommendations for things like school, extracurricular activities, and driving.

I also attended virtual events to understand current topics in eye genetics. I attended the conference for the International Society for Genetic Eye Diseases and Retinoblastoma (ISGEDR) and meetings by the NSGC Ocular SIG, where I learned a little bit about a lot of different research being conducted and listened to discussion on current clinical practice. It truly is incredible how much work is being done in this very niche field.

Lastly, I focused on creating resources and connecting with the community outside of the medical setting. I made a patient resource for a population of individuals that we see in our genetics clinics and volunteered at Blind and Visually Impaired Tennis, which is one of many adaptive extracurricular events that Clovernook organizes for the community. I am also currently in the process of writing a chapter on breaking bad news in eye genetics, which is going to be included in a medical textbook. One of the biggest takeaways from my rotation is the psychosocial aspect of counseling patients, who face many challenges when coping with major diagnoses. Common concerns are coping with loss of vision and changes to lifestyle, and sometimes, coping with the shock of life-threatening diagnoses that can partially manifest with vision loss.

Working with this population of individuals and learning from so many wonderful clinicians was one of the highlights of my time in grad school and solidified my interest in staying in this subspecialty. Five weeks did not seem like long enough, so at the time of writing, I will soon be starting a position at the National Eye Institute in Washington D.C. as a research genetic counselor, where I get to learn about all the eye stuff that I could possibly want!

-Moriah Edwards, class of 2022

Winter 2022 Newsletter

 

Elective Rotation: Neurogenetics

Courtney Hannum, class of 2022

Choosing a genetic counseling graduate program is challenging. While the major components remain the same between programs, each offers unique opportunities. A defining factor in my decision-making process was the diverse clinical rotations offered to Cincinnati Genetic Counseling Graduate Program (GCGP) trainees. Not only do the rotations span across specialties and institutions, but students are also encouraged to create their own 5-week elective rotation experience. 

Prior to my time at the Cincinnati GCGP, I found a passion for neurogenetics. For this reason, I knew I was interested in exploring the genetic counseling profession as it relates to neurological and neurodevelopmental conditions. I felt that the best way to experience a wide variety of neuro-related indications was through creating my own elective neurogenetic rotation. Fortunately, I was met with great support and excitement from my program faculty, genetic counselors, and neurologists. 

The process for designing my rotation began with outlining my goals and relating the plans to the American Board of Genetic Counseling (ABGC) competencies. I decided that my primary goals were as follows: 

• To gain exposure to a wide variety of clinical presentations relating to the field of neurogenetics. Specifically, to encounter patients with epilepsy, neurometabolic conditions, and neurodevelopmental disabilities.
• To increase my understanding of and to practice counseling on common psychosocial issues faced by families who have children with neurogenetic conditions.
• To spend time shadowing neurologists/physicians to increase my knowledge of both the diagnostic process and necessary follow-up.

To complete this rotation, I was paired with a pediatric genetic counselor to be my supervisor. I was responsible for creating my schedule each week and reaching out to the providers I planned to work with. Each week I spent 2 full days on clinical responsibilities. Throughout my experience, I counseled children with various neurodevelopmental indications in a GC only clinic and shadowed providers in epilepsy, neurosurgery, neurometabolic and movement disorder clinics. 

My most memorable experience was observing within the neurosurgery clinic. Here, I was able to witness how various surgical options, along with the benefits and limitations, are presented to families. I was not previously aware of some of the options, such as a functional hemispherotomy. This is a surgery where one hemisphere of the brain is completely disconnected in order to isolate abnormal brain activity and prevent seizures. Unfortunately, (and unsurprisingly) such surgeries come with great risks that caregivers must weigh on behalf of the child. The opportunity to observe these conversations provided me with valuable insight into the psychosocial needs of children with epilepsy and their families. 

In addition to being a genetic counseling trainee, I am also a Leadership and Education in Neurodevelopmental and related Disabilities (LEND) trainee. One overarching goal of LEND is to appreciate and promote interdisciplinary healthcare. I felt that this elective rotation really allowed me to dive into interdisciplinary care. I was able to practice communicating with a variety of different providers, learn about the roles of those providers, and advocate for the genetic counseling profession. The feedback received from other providers was very positive. So much so, that this will hopefully become a standing rotation option for future GC students. 

I am grateful for the unique learning opportunities afforded to me by the Cincinnati GCGP. I look forward to starting my position as a clinical genetic counselor at the Christ Hospital here in Cincinnati, as I hope to supervise future trainees.

- Courtney L. Hannum, Class of 2022

The Choice – A somewhat lengthy letter from an exhausted Black person

Jazmine Vaz-Baker, class of 2021

It has been a rough month for the black community. Well every day is rough, but I think we have learned how to muscle up and shoulder on despite the challenges. But this month, this month has just been too much. This month we have had to deal with the death of Ahmed Aubrey, Breonna Taylor, George Floyd. We had to watch a woman fabricate a story about a black man “threatening her life” when all he did was ask her to put her dog on a leash. Then there was a story about a woman who drowned her 10-year-old autistic son and blamed it on two black men.  And I am sure there are other recent stories I have not mentioned. 

It has been a rough month.

I have talked at nauseum about these topics with my black family and friends. I am so sick of talking. I am exhausted. The conversations always end the same way… What more can we do? Why do people not understand what is happening? Why do people continue to find ways to justify racism and discrimination? Why can’t black people be safe going about our daily lives? Why are we always targeted? Why is there a racial double standard? WHY? We have been asking these questions for centuries. 

It seems like we have tried it all, both peaceful (remember Colin Kaepernick got blackballed for literally doing the very thing that the Minneapolis police officer did to Uncle George’s neck) and violent protest. We have tried marches, sit-ins, speeches, petitions, the list goes on and on. Nothing seems to be working. I feel as though black people are shouting their grievances out in the void. I feel like we are alone in this fight, fighting a war we did not create. Racism has somehow become our burden to bear – ALONE – and it sucks. Black people cannot fight this alone, we need help, we need genuine and active allies. My question is, where are they?

I know a lot of white/ non-black people. I have a lot of white/ non-black friends. Yet when injustices occur is seems like I can consistently count on ONE HAND my white/non-black friends that speak out against injustice. The rest are always eerily silent. Posting pictures of their dogs, significant others, cooking recipes, vacations, etc. but no words of outrage for black lives being lost. Is it that they do not know what to say? Is it that they prefer to keep their social media pages neutral? 

Or is it that they do not care? 

Are they afraid to speak out?

All these possibilities run through my mind when I step into the virtual spaces of social media and take stock of my friends’ silence. It is appalling and discouraging. 

Yet these are the same people who always have such words of wisdom and insight during government, history, psychology, and health care class debates. 

We, and by we, I mean your so called “black friends” need your voices and support during this time. I need you to see Ahmed and George as my brother and my uncle and do more than just like a post and keep scrolling. I need you to weep and mourn with me. I need you to get angry with me. I need you to demand justice with me. 

You have spheres of influence in social spaces that I do not. I need you to do more than like a post about representation in politics and make textbook points about diversity. I need you to stand up to that racist uncle at Thanksgiving when he starts telling his yearly racist jokes. Inform him how his racist ideology is hurtful and hinders our country’s progression. Make him uncomfortable when he starts spewing out hate. That is how the small battles are won. No one is asking you to storm the KKK’s stronghold (10 OUT OF 10 - WOULD NOT RECOMMEND), but you are failing us when you stay silent.

We are simply asking you to really listen to our grievances, take them to heart, make and demand change where you can. If you do not know what to do or how to do it, ask for guidance. But staying silent is getting harder to accept.

I have always found more comfort in expressing my most inner thoughts to paper than people, because paper does not judge, neglect, or put down the words written on them, it simply displays them for the reader to form their own interpretation. I often do not express thoughts like this to my peers or friends. As a black woman I occupy mostly white spaces. Since the 6th grade I have been 1 of 2, maybe 3, on a rarest of occasions 1 of 4 black/brown/POC in my class. Moving from a predominantly black elementary school, it was jarring at first, then I got used to it. Now it is my normal.

I remember crying hysterically as a little girl when my dad got pulled over for driving in the HOV lane without a second passenger (I was too little; the officer could not see me in the back seat). I thought he was going to arrest my father. The police officer was embarrassed when my dad explained to him the reason for my tears. Maybe I watched too much of the show COPS as a child (the theme song is still the jam), but my fear was extremely real. 

Have you ever cried when your father has been pulled over by the police?... *waiting for you to share your traumatizing cop experience* (my dad and I laugh about it now… we can laugh now… it was not funny to me then)

I had a group of young white men (who I did not know) call me the N word while I stood at the bus stop waiting for the school bus. I cried, I went to school, I went home. I moved on. I do not think I ever spoke of it, but I know I will never forget it.

I realize now that calling a black person the N word does not kill them (it wounds them deeply and should NEVER be used ever), but health care disparities, racial profiling, and police brutality does (just to name a few). These are the things we are fighting to change.

Anyway, I say that to say this, I often feel uncomfortable expressing my views on race within my social and academic spaces, because I have seen how it goes. You express sadness, anguish, and frustration at racial injustice, and they hit back with a “but racism doesn’t exist anymore” 

“but slavery ended so long ago” 

“things are so much better now” 

“Obama was president for 8 years (AND?! BRUH BE QUIET AND JUST STOP)” 

“ALL LIVES MATTER” 

“black lives matter is anti-cop (IT ISN’T BUT OKAY BECKY)” 

“not everything is about race” 

“I’m colorblind”

“You’re not like the other black people OR I am not talking about you” (Lord have his mercy with this one)

“I have black friends, so I am not racist” (This one just takes the cake every time)

“maybe if he listened to the police…” The list goes on and on. 

[IF YOU HAVE EVER SAID ANY OF THIS… PLEASE STOP!!!]

And after they’re done explaining, disregarding your feelings as a black person, neglecting to recognize the struggle we face, and flat out not listening to a word you said, you have to wonder is this person really my friend?

Better yet, does this person understand me? Do they see that I am black? DO THEY SEE ME?! 

After a while, hearing this rhetoric from white/non-black peers and friends both from CHURCH…

• Quick Side Note: [which hurts in ways I cannot explain…it’s disturbing to know that if a video of one of your black church members surfaced of some officer or man otherwise crushing their fragile neck, the most you can do is text their mother and father of a bible verse about peace and being “one race under God” or “we are all God’s children”.  Remember your black church members can see your posts on Facebook and the like and you are disregarding our feelings. DO BETTER PLEASE!] 

…and school, I learned to keep those opinions quiet. I just observe, I listen, I take note. A whole lot of people have black friends that they do not really understand. They will joke with them, ask them to “spill the tea, tell Felicia goodbye, and laugh about being an independent woman who does not need male companionship”, bop to the latest rap song with you (because some of them still think getting down to rap music gives them an in with the people), cry tears at 12 Years a Slave and turn around and look dead in your face and tell you…

“but slavery ended so long ago… I don’t understand why people are still racist” 

*somewhere MLK rolls in his grave*

SIGH. As T-Pain once said…

“If you ain’t got it by now, you just ain’t getting it.” – “Kiss Kiss” by Chris Brown ft. T-Pain 2007. An iconic line if you ask me.

I share my true opinions on race and how racial injustice really hurts me with a few trusted people outside of my family, because I do not want to be hurt. I do not want to be let down by friends I have come to know, share laughs with, and made memories with. Sometimes it is just easier to laugh about memes and vent about the stress of work or school, then to subject myself to hurt by exposing my friends’ while non-malicious, unhelpful ignorance towards deep race relations. 

Do you know how hard it is to see another black person killed for no reason or witness someone call the cops on them for literally breathing oxygen outside their home, and then turn around and walk out into the world smiling and choosing joy?

To never have anyone ask, “hey, I saw everything that happened on the news this past weekend, are you okay?”

I don’t expect this of course, but every once in a blue moon, it would be nice to be seen for the black girl that I am, and that I am affected by seeing my brothers, fathers, uncles, friends, mothers, sisters, aunts, cousins, etc. killed on TV like animals. It is painful to watch; it is painful to hear. It is heart wrenching to see people defend this evil behavior.

I must navigate spaces surrounded by people who do not look like me every day. While I do this I actively choose love, I choose joy, I choose forgiveness, I choose hope, I choose to see the good in people, I choose not to be angry, I choose not to blame descendants who are not responsible for their ancestors actions, I choose not to hate. I choose Jesus and his grace.

I choose these things because the alternative leads us nowhere. 

I choose these things because I believe change is possible. 

Black people have been crying out for mercy, justice, and equality for centuries. We cannot fight this battle alone.

Please understand your black friends are hurting. The pain is centuries old and unbearable. 

I am choosing to march forward to the vision the Dr. King so passionately talked about.

You for so long have chosen silence.

I implore you now to make a different choice. The choice to truly stand with us and speak out. 

Sincerely,

Jazmine – an exhausted black person
class of 2021

Graduate School and Graduation during the COVID-19 Crisis

It’s 7:30 on a Tuesday. I hop off the shuttle from the parking garage and make my way to the E building. I’m feeling healthy today, so I take the stairs up to the 5th floor. I badge in and sit down at my desk to respond to a few emails before our 8:00 Advanced Genetic Counseling class.

It’s 7:45. My classmate April walks in. In keeping with our daily routine, she asks if I want to make coffee with her. Of course I do! We grab our respective mugs and K-cups and shuffle over to the break room, catching up on each other’s evenings. Piping hot coffee in hand, we trickle in to our classroom along with our 10 other classmates. We each take our unofficially self-assigned seat around the table. We’re all chatting as though we haven’t seen each other in weeks. (We had class together 15 hours ago and then went to Monday night trivia at MadTree together). Joshua says something funny and/or very Canadian, we all laugh, and eventually Carrie gets started with class. Today’s topic is compassion fatigue and burnout in genetic counseling.

It’s 11:00. I’m heading back to my desk from a meeting with my clinical supervisor. We reviewed the plan for this afternoon’s patients and agreed to meet in clinic at 1:00. In the meantime, I make some revisions to my thesis and schedule a meeting with my research advisor for the following day.

It’s 2:30. Clinic is busy today!

It’s 5:45. I arrive home after a busy day. My dog greets me enthusiastically as I unclip my badge and take off my shoes. A few minutes later, I get a text from my classmate Chloe: “Burgers tonight?” Yes! I put my shoes right back on and head out the door.

It’s 9:30. Dinner was fun! I’m exhausted, but I’m glad I went. I set my alarm and my head hits the pillow, ready to do it all again tomorrow.

The COVID-19 crisis forced a transition from normal life to completely uncharted territory for everyone in a matter of days. We as a program had to quickly adapt to the many challenges that came with this unexpected transition to remote learning and social distancing.
For me, the biggest challenge of being a genetic counseling student during the COVID-19 crisis has been dealing with my own feelings of loss and grief. As a second year student growing more and more eager to add that “MS” to my name, there was no world in which I ever anticipated a cancelled graduation. I could not wait to put on that cap and gown and celebrate all of my class’s accomplishments. I was so excited for my parents to see all of my hard work, meet my classmates and faculty, and enjoy some of my favorite places in Cincinnati with me. My classmates and I have been talking about ideas for our graduation reception for literally almost two years now. This was going to be the culmination of everything we’ve done on our journey to become genetic counselors. And it was just...cancelled. I knew it was coming. Everything else had been cancelled. Businesses were closed. We were ordered to stay in our homes. And yet, graduation was the one thing I was still holding on to. Maybe, just maybe, things would be normal again by April 30th. Up until that point, I had been bottling up all of my grief. Seeing the email pop up in my inbox with the subject line “Spring 2020 Commencement Postponed” was what finally broke me. I knew the university was making the right decision. “It’s not safe to hold a graduation ceremony right now,” I told myself. I sat on the couch and cried anyway.

Over the last two years, my classmates have also become some of my closest friends. As we started accepting jobs around the country throughout our final semester, I was already feeling particularly sentimental about making the most of our last few weeks together. We were going to go to brunch every weekend, go on tons of hikes as the weather got nicer, laugh our way through many wine-filled game nights, spend lazy days at my apartment pool, work separately but together at our desks on E5...and I was ready to cherish every last moment.

But we left for Spring Break and never came back. It has become increasingly clear that I may not see any of them again in person before I move to Chicago.

Our entire program has been flipped completely upside down over the last few weeks. We have had to learn a completely new normal as everyone has been figuring out how to work from home. Technology issues have been frequent, classes and meetings have often been interrupted by partners/pets/kids, and yet, nobody seems to mind. We are all in this together, but apart. Despite the lack of in-person contact during the COVID-19 crisis, we as a program have really worked hard to maintain a sense of community. We hold weekly virtual lunches for everyone in the program to attend. Topics of conversation have included: quarantine baking, unique challenges we each face while working from home, and of course, Tiger King. This 45-minute get-together is something I look forward to every week because there’s something about just hearing and seeing everyone that makes me feel a little less isolated. Our second year class group chat continues to be very active, a constant stream of memes and pictures of our pets. We hold Skype game nights at least once a week and have managed to come up with an arsenal of phone-based games we can play together remotely. More often than not, several of us linger on Skype calls after class a little longer to keep chatting.

Classes, clinical rotations, and research have also required some major adaptations. All classes and thesis defenses were switched to remote. Instead of a triumphant thesis defense photo of me in a sharp blazer in front of my title slide, I’m now presenting from my bedroom with my dog barking in the background. In-person clinical rotations were cancelled, but these experiences were supplemented with an assignment related to our online Case Series as well as telemedicine role-plays with supervisors. My community education experience that got cancelled due to COVID-19 turned into this blog post. Program interviews, which have always been some of the most exciting days of spring semester, were made remote. I imagined how hard it must be for applicants this cycle, many of whom have been unable to visit campuses and meet faculty and current students in person. We typically host an informal meet-and-greet for interviewees and current students called Dessert Night the night before each interview day. I wanted to come up with some sort of remote alternative to give our remote interviewees that same opportunity, and so Bring Your Own Dessert Night was born! A virtual recognition ceremony for the Class of 2020 is in the works as well. We as a program have truly risen to the challenge and adapted to this entirely new normal in just a few short weeks, and I think that’s pretty remarkable. It’s not the same, but I do feel fortunate that we’re living in a world where we have these electronic resources to keep in touch and maintain a sense of community while we’re all stuck in our respective homes. And so, we’ll continue doing what we’re doing. We’ll keep rising to new challenges to adapt to these ever-changing and unprecedented times.

I never factored a global pandemic into my graduate school plans. We talk a lot about grief in the genetic counseling setting, and one of the types of grief that often comes up is a loss of normality. I never quite understood what this meant until now.

I am safe and healthy. I have a roof over my head and plenty to eat. I have supportive friends and family that love me. I’m about to earn my Master’s degree!!!!!

I have so much to be thankful for, and yet, I’m grieving. I’m grieving the loss of my normal and the loss of my plans. The coping process has not been linear, and some days have been harder than others. Despite the grief, I know that my training has prepared me to be a competent and confident genetic counselor, ready to take on the real world as soon as it re-opens. It has truly been an incredible two years, and I got to experience it all with some of the most amazing people I’ve ever known by my side (and/or by Skype).

The finish line wasn’t what I expected, but I sure am lucky to have taken the journey.

Kelly Buh

Class of 2020

Supporting Students with March Madness

The Madness is upon us, and that means it's time to test your prognostication prowess in the most exciting tournament in sports! 

The University of Cincinnati/Cincinnati Children’s Hospital Medical Center Genetic Counseling Program is hosting an NCAA Men’s Basketball Bracket Challenge. 

All proceeds benefit student scholarships. 

Here's your chance to both support the education of future genetic counselors and test your hoops expertise in the ultimate tournament pool!

To participate online, follow these instructions:

• Create your bracket here: GCP March Madness Bracket

• You may need to create an account at this link before completing your bracket

• Make your tax-deductible donation here (or see below for other ways to donate): Donation

• Complete your bracket once teams are announced on Selection Sunday (March 17th). Brackets must be completed before play begins on Thursday, March 21st.

• Watch the madness unfold and cheer on your top picks!

If you prefer to donate in person, Alexandra Magnante or Preethi Pillai will be able to accept credit cards, checks, and cash beginning Wednesday, March 6th. Please email GCPMarchMadness@cchmc.org if you have any questions.

We are suggesting a tax-deductible donation of $15 but certainly appreciate any amount you are willing to contribute. Dr. and Mrs. Carl Huether are also currently offering a generous matching 3 to 1 gift so no amount is too small! Please consider forwarding this email to anyone else you think might be interested in participating. 

THANK YOU!

~UC Genetic Counseling Program

Elective Rotation - Assisted Reproductive Technology

Becky McGowan, 2nd Year Student

One of the opportunities afforded to students in the UC genetic counseling program is the ability to select our own summer rotations.  Having an interest in the area of infertility and preconception genetic counseling, I worked with the program to find two unique rotation opportunities for the summer with genetic counselors at embryo testing laboratories.   In each of these rotations I was able to learn about the types of genetic tests available at the preconception stage, about effective methods for telephone counseling, and about the specific challenges and emotional burdens faced by the preconception patient population.

My first summer rotation was heavily focused on preimplantation genetic testing for single-gene conditions, or PGT-M (monogenic).  This test is available largely to those who know that they have a personal or family history of a condition such as Huntington’s disease, Fragile X, breast cancer, etc. with a known familial mutation already established. Often individuals may not have a family history, but are identified via carrier screening through their fertility clinic as being at risk to have a child with one of the tested genetic conditions.  Couples choosing to screen embryos via PGT-M are often seeking to stop the cycle of disease that has been in their family, or may have lost a child or had a child with a severe presentation and wish to use the technology available to choose to implant an embryo that would not carry the genetic mutation.  Often couples who use PGT-M may not have fertility concerns, but may be going through IVF specifically for this genetic test. 

In my second summer rotation I focused on preimplantation genetic screening for aneuploidy, or PGT-A.  This test screens embryos to see if there are extra or missing chromosomes (aneuploidy).  Having extra or missing chromosomes is the greatest factor in embryo implantation failure and early pregnancy loss. Performing this test increases the chance of establishing a pregnancy during IVF, while also screening for conditions such as Down syndrome, which typically is caused by an additional copy of chromosome 21. 

Since the counseling was performed remotely, I was able to experience a really diverse array of patient interactions. I worked with patients all over the country as well as internationally. I was able to work with same-sex couples, couples using surrogates or gamete donation, single individuals, couples facing male-factor infertility, female-factor infertility, or unexplained infertility.  Patients came to the genetic counseling sessions with different goals and different past experiences on their journey to conception. It was a tremendous opportunity to be a part of that process and allow patients a space to ask questions about genetic testing options. 

Genetic counseling consultations for both of these tests followed a similar structure to the in-person genetic counseling sessions I have been involved in during my other rotations! We started by contracting with the patients and asking what their hopes or goals were of the testing, as well as what information they had coming into the session. In many cases we took a pregnancy history, and for PGT-M cases, where other family members had the condition, we generally took a pedigree and inquired about relatives.  We also reviewed the available test reports and often contacted other laboratories or genetic counselors regarding previous testing or if remaining DNA was available.  The PGT-M cases involved designing a probe with samples of DNA from two generations of family members to track markers that sit above and below the gene of interest. We discussed residual risks, prenatal testing options, and set expectations with patients by discussing the potential outcomes of testing.  In both rotations we worked closely with the laboratory team to determine the best testing approach for each patient.  I also worked on responding to physician inquiries regarding specific patient concerns or testing questions. 

In my second rotation I also had the opportunity to put together and deliver two presentations on another genetic test, endometrial receptivity analysis (ERA).  I spoke about counseling considerations involving this test to staff at a fertility clinic, including nurses, physicians, and lab staff.  I also presented on the test design and the role of the genetic counselor in working with ERA patients for genetic counselors in the special interest group for ART and infertility through the National Society of Genetic Counselors (NSGC).  These experiences allowed me to work on my public speaking skills and educate other providers about the benefit of genetic testing and genetic counseling. 

Overall, my summer rotations were a phenomenal learning experience.  Industry is a rising site for employment of genetic counselors, and it was a great chance to experience work at a for-profit laboratory setting.  Both of my summer sites were heavily involved in research and genetic counselors were encouraged to be involved in research projects.  It was great to see how genetic counselors in these positions are able to move the field forward and improve patient care.   I became very comfortable speaking with patients over the phone and being able to pick up on non-verbal cues to guide psychosocial counseling.  I often felt that patients were more comfortable being emotionally vulnerable over the phone and in the comfort of their own familiar setting, as opposed to in an unfamiliar clinic environment.  It was also very gratifying to be a part of the journey with women and couples who were seeking to build their families.

 - Becky McGowan, Second Year Student

This Is What I Know. Now What Can We Do? – Racial Diversity in Genetic Counseling

Bryana Rivers, Cincinnati GC Student

The lack of diversity in the field of genetic counseling is an issue that has been present since the start of the profession. However, very few studies have actually been done on the presence of underrepresented minorities (URMs) in the field. A 2008 study by Mittman and Downs about the past, present, and future of diversity in our field explains that, despite efforts to increase diversity, the field of genetic counseling is still composed of over 94% non-Hispanic, white genetic counselors. The article focused on underrepresented racial and ethnic minorities within the field, such as African Americans, Native Americans, and Hispanic Americans, quoting these groups as comprising about 2 to 3% of the profession, but about 33% of the general population. That means that our presence in the field is vastly disproportionate to our presence in the general population.

Increasing diversity in the field is important to allow individuals like me to have colleagues and mentors who look like me and so that our patients can have providers who look like them. As a black female entering the field of genetic counseling, I can only speak about my own experiences, which may not be the same for all genetic counselors who belong to a minority group. Nonetheless, I think that it’s important that I share my experiences and that others have the opportunity to share their experiences as well.

One particular experience that stood out to me occurred during my summer rotation here at Cincinnati Children’s Hospital. My patients were siblings, a black male and a black female, with diagnoses of developmental disabilities and hypotonia. They were accompanied by their mother and their maternal grandmother. Both children previously had extensive genetic testing, including panel testing, single gene testing, and microarrays, which were all either normal or had several variants of uncertain significance (VUSs). For social reasons, variant tracking in the family was not attainable. What we did know, was that one particular VUS of interest was presumed to be paternally inherited.

Our patients’ mother was hoping to get some answers from us so that she could have a definitive diagnosis for her children. Without a diagnosis, she had been struggling to access the necessary resources they needed in school. Unfortunately, for this family, we could only communicate our suspicions of what was causing the developmental disability, but we could not give them a definitive cause, diagnosis, prognosis, or recurrence risk.

At one point during the appointment, the mother had a question for my supervisor and me. She stated that she had an honest question, but that she was unsure of how to ask it without coming across as offensive. We encouraged her to ask the question anyway. She wanted to know if we, as black health care providers, have seen “other people who look like us” with the same variant found in her children. Honestly, I wasn’t sure what to say. I deferred the question to my supervisor who explained that the variant found in her children has not been previously published or described in other patients. She then went on to explain that the mother brought up a great point about VUSs in black patients. Being that we are a less-studied group, VUSs are more commonly seen in minority populations than in white populations. The patients’ mother added that she felt that there are barriers to healthcare and genetic testing in minority populations that also contribute to the lack of data and knowledge of how certain genetic variants affect our health. Afterwards, she told my supervisor and me that we have a responsibility as black women to improve our knowledge of genetic variants in minority populations while making sure that they are not being taken advantage of by the individuals conducting the research.

That was a loaded statement that I have reflected a lot on since I saw that family. In that moment I felt heartbroken for this woman who had worked so hard to obtain the best care for her children, but had so many doors closed in her face while trying to access the necessary resources. However, I also felt thankful that my supervisor and I were the ones who saw these patients because their mother was able to open up about questions she has been holding onto and challenges that she has been facing while advocating for her children.

I cannot stress enough how important it is for patients to feel comfortable, to feel heard, and to know that they will not be ignored or discriminated against by their providers based on the color of their skin. I don’t want to suggest that a genetic counselor who wasn’t black wouldn’t have listened to her, but there are factors outside of what we do and say that can have an impact on our patients. Just the fact that she was able to lower her guard a bit because we share the same racial background as her speaks volumes.

People like seeing themselves represented in their social and professional circles, including their healthcare providers. This is just one example of how increasing diversity in the field of genetic counseling can help our patients. But now the question is: Why have past efforts failed to improve diversity in the field, and what can we do to fix it?

--Bryana Rivers, 2nd Year Genetic Counseling Student

Qualified Bilingual Staff & Language Access Services

QBS Badge Backer

Growing up, I spoke both English and Urdu – the native language of Pakistan, which is where my parents were from. I never considered my bilingual skills to be anything special until I started my time at the University of Cincinnati/Cincinnati Children’s Genetic Counseling Program. During our orientation week, a member of Cincinnati Children’s Hospital Medical Center’s (CCHMC) Diversity and Inclusion department spoke with us about cultural competency. The presentation included information on Language Access Services, and a program called the “Qualified Bilingual Staff”. In CCHMC, if any staff/employees are bilingual, they can train through the hospital to be able to become a Qualified Bilingual Staff (QBS). A QBS member may
  

1) Provide interpreting to, or speak directly with patients and their families at the hospital outside their appointments in the target language, and/or

2) Provide interpreting to, or speak directly with patients and their families at the hospital during their medical appointments

To become a QBS member, one must first take an assessment in their target language, which in my case was Urdu. Since Urdu is considered a rare language, I took my assessment over the phone rather than in person. The assessment tested my spoken skills in Urdu, progressively becoming more difficult till I could no longer answer the questions being asked. Based on the assessment scoring, one is assigned either a QBS Level I or QBS Level II. 

Falling in the Level I range meant that you could provide interpreting to, or speak directly with patients and their families at the hospital outside their appointments, for example, if a patient is asking for directions in the hospital. Falling in the Level II range meant that you could provide interpreting to, and speak directly with patients and their families in the target language in their medical appointments. Fortunately, I was assigned to be Level II. An additional perk of being Level II is that you can get paid for providing interpreting for medical appointments! 

Before you can be recognized as a QBS member, you must first complete QBS training via CCHMC. I completed my training at the end of my first year in the genetic counseling program, right before I headed out of town to my summer rotation. Since returning to CCHMC for my second year, I have not provided any interpreting for medical appointments (by choice), but rather I have taken on a part time job with the Language Access Services department. At my job, I have worked to create a resource for interpreters whose target languages are rare, like mine. While there are plenty of resources available for interpreters of the more common languages such as Spanish and Arabic, there aren’t many training resources for interpreters who have rare target languages, such as Urdu. In creating this resource, I have also had the opportunity to shadow the CCHMC staff medical interpreters.

The experience of training as a QBS member, and working with Language Access Services has allowed me to appreciate the role of medical interpreters from the perspective of the interpreter. I realized how helpful this experience was when I myself counseled a patient with an Arabic medical interpreter present in the room. I found myself to be much more comfortable with the medical interpreter in the room, and it made the delivery of information to the client much more effective.

I am grateful to have been a part of an institution that has a well-developed Language Access Services department, and provides services every day to numerous patients and families with limited English proficiency. I am passionate about continuing to grow in my cultural competency, and my work with the Language Access Services has helped contribute to that by allowing me to better appreciate the intertwining nature of language and culture.

Fatima Amir, Class of 2018