Ana Morales

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Brandeis University, 2001

University of Puerto Rico, 1998

Current Specialization: Cardiology

 

 

Tell us about your first exposure to genetic counseling.

I majored in biology at the University of Puerto Rico. While I was in school I worked part time in different molecular genetics basic research laboratories, as part of the Maximizing Access to Research Careers (MARC) U-STAR program. Every year, one or two students were selected for the Howard Hughes Summer Fellowship at Brandeis University. I was selected in one of the cycles, and during that summer, I worked with Dr. Jeffrey Hall in his Drosophila (fruit fly) genetics research laboratory. When I finished my undergraduate degree, I did not feel passionate about anything but finishing the work I had started with Dr. Hall, so I contacted him and asked if I could return and work as a full time laboratory technician in his lab. The answer was yes, and within months I was back at Brandeis University, continuing the genetic research on fruit fly mutants. One day, walking down the hallway, I saw a flyer from the genetic counseling program at Brandeis University and something clicked within me.

What specialty of genetic counseling do you work in? How did you come to choose it?

Currently, I work as a cardiovascular genetic counselor. I chose this specialty because it has given me the opportunity to help identify individuals at risk for sudden cardiac death and advanced heart disease. Knowing that I can play a significant role in helping save someone’s life is a huge motivation to stay in this specialty, learn more, and improve my skills. I am also heavily involved in cardiovascular genetic research. Being able to approach my work from both the clinical and research perspectives gives me the opportunity to provide cutting edge care.

Describe the path that led to choosing to be a Genetic Counseling.

I had just finished my undergraduate degree in Biology at the University of Puerto Rico, and I felt uninspired by the typical doctoral career choices in biology. I knew I had accumulated a good deal of knowledge and, thanks to my early exposure to molecular genetics research labs, got top grades in genetics and biology. Reading and writing were things that always came easy to me. I liked the flexible, continually evolving environment of a research laboratory. However, I could not think of a research question that would fascinate me enough to spend the rest of my life in a basic science career. I sometimes also found it challenging to find meaning in spending countless hours studying a tiny detail of an intricate biological system, which I knew mattered, but not immediately, perhaps not in my lifetime…there was no obvious direct, tangible impact. Now that I have had the opportunity to work as a genetic counselor and do research with relevance to my genetic counseling sessions, it’s easy to come up with research questions to keep me busy and excited for the rest of my life! In deciding to become a genetic counselor, I realized that I could also use my ability to relate well to others. In relationships, I was often the curious one who asked all the questions. I was the listener and support giver. Now that I found something to feel passionate about, I feel inspired to pursue higher education in genetic counseling.

What role did your family members play in choosing a career? ​

My family did not play a role in choosing my career, but there were very clear expectations: strive for excellence, choose the career that best used my gifts, and no matter what, finish college.

Did someone in your family introduce you to this field?

No one in my family introduced me to this field. However, one of my aunts was a secretary at the Instituto Psicopedagogico de Puerto Rico (Psychopedagogy Institute of Puerto Rico), where children with intellectual disabilities received special education or were institutionalized. She often took me to work with her and introduced me to many of the children that they cared for. She would tell me the stories about the nature of their disorders (which were often genetic) and how some of them ended up institutionalized. Thanks to her and my exposure to this center’s philosophy, the children, and their families, I learned the concept of “people first.”

Did someone in your family encourage you to achieve a goal or pursue something in particular?

No one in my family encouraged me to pursue anything in particular but they did encourage me to be the best I could be and use my talents in the best possible way.

What was your family’s reaction to your choice of career?

They were surprised because they had never heard about genetic counseling, and I guess everyone, including my friends, kind of assumed I would pursue a PhD in science. I had to give a very detailed explanation to help them understand my career.

How did you explain genetic counseling to your family?

I explained that genetic counselors are allied healthcare professionals who assess genetic risk, offer tests to confirm or diagnose a genetic condition, and provide emotional support along the way.

Tell us about your most influential role model or mentor.

I remember that my molecular cell biology professor from the University of Puerto Rico, Dr. José E. García Arrarás, advised that if I wanted to be successful, I had to leave Puerto Rico. His words encouraged me, and once at Brandeis University, I learned about genetic counseling. At that time, I figured that since there was no genetic counseling in Puerto Rico, I could pursue training to help fulfill the need for genetics services in Puerto Rico.

Tell us about any experiences you’ve had working with diverse patients.

I have worked as a genetic counselor at the University of Puerto Rico and at the University of Miami in Florida. At the University of Puerto Rico, most of the population is of Puerto Rican origin. The most important insight from my experience working in Puerto Rico is the enormous need for genetic services, and the lack of resources available to satisfy this need. The patients that I worked with were very grateful that the medical center had a genetic counselor on staff. Unfortunately, I had to leave because of funding issues.

At the University of Miami, I was exposed to a more diverse population; still predominantly Hispanic of Caribbean-Cuban descent. The medical system in Puerto Rico and in other places of Latin America is very different than the United States’ system. Some patients, myself included when I migrated, struggle with the US’ appointment and insurance-based system. Also, medicine can be very paternalistic in Latin America in which doctors and health professionals make all the decisions for their patients. Patients can get frustrated with the patient-centered model of genetic counseling that encourages them to make their own decisions. Some patients also do not know that pregnancy termination is an option in the United States. My understanding of the differences between healthcare in Latin America and the US, has helped me anticipate when my patients may need help with these issues.

Do you think that sharing a similar background helped you to provide the better care for the patient?

I don’t think that matching patients and providers based on race or ethnicity is the solution to providing quality care. This is a dangerous, slippery slope: it also means that non-Hispanic patients do not receive the best care when they see me. However, because I know both medical systems, I am better able to anticipate potential conflicts that the patients may face as they navigate the United States’ healthcare system. I also speak and write in Spanish; therefore, in my sessions with patients who prefer to speak Spanish, an interpreter is not needed. This means that sessions are not as long as they can be when an interpreter is used, and most importantly, there is no uncertainty about the accuracy of the translation.

What was your experience as a student in your training program? Do you think that your experience was influenced by your background?

I had a great experience in my training program. Even though I have an accent and I look Hispanic, I rarely think of myself as different. Therefore it is hard for me to attribute an experience to my cultural background versus to just the way I am. One thing that caught my attention during my training was that ethnic minorities are often defined in the context of social vulnerability and health disparities. I remember raising my hand in order to clarify that belonging to an underrepresented ethnic group does not automatically mean that you can expect to be deprived of your rights.

What do you enjoy most about being a genetic counselor? Least?

What I enjoy the most is that I have the opportunity to provide crucial information that can influence someone's healthcare management. Even when I give bad news, I feel proud of my job because I think of how it would have been if not done by a genetic counselor. This reaffirms the importance of what I do. I also find it exciting to be in a profession that is continually evolving with new knowledge and technologies. I work an average 10-12 hours every day, but I don’t have to be “on call” or struggle to seek funding.

My least favorite thing is the fact that most people still don't understand what a genetic counselor does. In some positions, there is not a lot of opportunity for career advancement. Access to services is also limited by lack of licensure in many US states and genetic counselors’ inability to be directly reimbursed by Medicare. Thankfully, the job market is highly favorable, and our leadership is working towards removing these barriers.

What personal or professional goals did you have when you decided to become a genetic counselor? Have these goals changed, and if so how and why?

Since my days working as a research technician, I knew I wanted to be in academia, and that remained a goal when I decided to become a genetic counselor. This goal became more specific at the University of Miami, when I realized that it was possible to provide clinical service seeing patients, high level education and do relevant research while working as a genetic counselor. My commitment to achieving in these areas led to a faculty appointment at the University of Miami, which in turn fueled more enthusiasm to continue following a path of excellence.

Today I have reached a point in my career where aspiring genetic counselors look up to me for education and mentoring. My goals have changed because now I am not only striving to improve myself; now it’s also my job to lead.

What direction(s) do you think the profession of genetic counseling will take in the future? How might future trends affect ethnically diverse genetic counselors?

The genetic counseling profession will become mainstream. More states will offer licensure and we will be recognized Medicare providers. When this happens, a larger proportion of the population will access counseling services, which in turns means increased patient diversity. More training programs will emerge as a result of this increased visibility, and more prospective students of all backgrounds, like me, will discover this exciting profession. Professionals with a good grip on cultural competency and understanding of different cultural groups will be highly sought.

Why do you feel it is important to genetic counseling for more ethnically diverse students to enter the field? How would greater ethnic diversity impact the profession?

I believe that greater diversity would impact the profession because different ethnic or cultural groups bring new perspectives and values that can positively impact leadership, research, and education in our profession. A diversified workforce can not only bring new tools and approaches to counseling, but also provide greater visibility at the national and global level.

If you could offer one piece of advice to students considering genetic counseling as a career, what would it be?

Once you completed all your course prerequisites and earn a good GRE score, the real work begins: get a job or volunteer for a crisis intervention service or a place where you will be exposed to clinical genetic counseling. Also, visit, call or email a genetic counselor and ask questions. Go online and research the field as much as possible. For example, subscribe to a newsletter, follow influential LinkedIn or Twitter users; be on top of the latest news in genetics. You can also go check out books and movies that illustrate the value of genetic counseling, for example, “Decoding Annie Parker” is a recent movie about inherited breast cancer.

Do you have a favorite story from your career you’d like to share, either working with a patient or with other medical professionals?

The following story illustrates the multiple key roles that a genetic counselor can have in a case. It also helped me solidify my goal of providing clinical service, high level education, and translational research while working as a genetic counselor. I also use this case example in my teaching in order to illustrate principles of clinical and research cardiogenetics, as well as, the psychosocial aspects of dealing with genetic conditions:

I was asked to see a 69-year old patient with sudden onset of dilated cardiomyopathy (DCM) with heart failure; a condition in which the heart cannot pump sufficient blood to the body. We suspected a genetic component given the sudden onset of her symptoms. The patient was surprised that we thought it could be genetic but both she and her family were enthusiastic with the idea of figuring out the basis of her condition. We also explained the possibility of genetic test results being used to identify at-risk relatives.

Genetic testing was performed. While waiting for results, the patient had a heart transplant. The genetic testing results arrived while she was recovering, she was positive. When doctors looked at her explanted heart, they realized that her heart had features of another form of cardiomyopathy (arrhythmogenic right ventricular cardiomyopathy, also known as, ARVC). That was an unexpected finding that made her genetic test results questionable. We had ordered testing for dilated cardiomyopathy, not ARVC.

I did the easy part, which was to order more genetic testing, this time for ARVC. However, I was not satisfied with the validity of her positive genetic testing results anymore, so I spearheaded collaboration with a research group. Our aim was to determine whether the mutation identified in her first genetic test could impact heart muscle function. Her ARVC genetic test came back negative, but the research laboratory showed that the mutation identified in her DCM genetic test actually had effects consistent with a disease. I then offered predictive genetic testing to her adult, at-risk children. Both were positive, meaning that they were at-risk for developing cardiomyopathy in the future. However, predictive genetic testing has limitations, in the sense that it is not possible to predict at what age the condition will appear, nor can we predict what type of heart problems to expect. We had all this data, but at the same time, had so many unanswered questions.

In a follow up visit, our patient expressed feelings of guilt and her husband expressed regret for supporting a genetic investigation in the family. Post clinic, the physician I worked with in this case commented he didn’t know what I did when I went in that room during that follow up visit, but he noticed that the family, especially the husband, was a very different man before and after my intervention. We ended up publishing the scientific findings of this case (Morales et al., Late onset sporadic dilated cardiomyopathy caused by a cardiac troponin T mutation. Clin Transl Sci. 2010 Oct;3(5):219-26.). I offered research participation to the family in an effort to continue the genetic investigation; hopefully one day we will have all the questions answered.