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
|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.
- 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.
|Jazmine Vaz-Baker, class of 2021|
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”
“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.
Jazmine – an exhausted black person
class of 2021
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.
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.
~UC Genetic Counseling Program
|Becky McGowan, 2nd Year Student|
|Bryana Rivers, Cincinnati GC Student|
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
|QBS Badge Backer|
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.
Fatima Amir, Class of 2018