Debra Collins '79, MS, CGC

• Received her Bachelor's degree in Computer Science & Sociology from the University of Texas, Austin
• Worked at the Boston Children’s Hospital's Genetics Clinic (ordering lab supplies, volunteering in Cytogenetics lab, taking family histories in genetics clinic, and attending case conferences) and for the Family Development Study at the Children’s Hospital (as a computer programmer) prior to SLC
• Master's thesis topic focused on craniosyostosis syndromes
• Elected President of the National Society of Genetic Counselors (1988), and elected to the Board of Directors of the American Society of Human Genetics (1999-2001) and the Board of Directors of the American Board of Medical Genetics (1989-1994) and served on the first Board of Directors of the American Board of Genetic Counseling (1993).

Why did you choose Sarah Lawrence for graduate school? Why Human Genetics?

I wanted to go to Sarah Lawrence because the program was highly recommended by Dr. Park Gerald, the geneticist for whom I worked at Boston Children’s Hospital. A former laboratory technician, Pam (Pierce) Hawley, had just started the program at Sarah Lawrence. I was already interested in genetic counseling, but needed more clinical experience since my undergraduate studies were in math and computer science. My transition from Texas to Boston two years earlier helped me adjust to living on the East coast, and the idea of living in New York City was exciting to me. I thought it would be an adventure, and it was!

I liked the problem solving aspects of math, and I had taken the new computer science course in high school. I decided to major in computer science because I thought computers might be “the thing” for the future. Initially, it was a math major, until the University developed an official computer science degree. However, I found that few people wanted to have a conversation about computer programming issues like DO Loops and FORTRAN programming, and started looking for a career involving more interaction with people. I took a course for non-science majors, which was based on the book Heredity, Evolution and Society by I. Michael Lerner (1968). I saved that book, and recently I found the worn & weathered copy in my basement. I had underlined the following words, which I know eventually led me to change my focus and pursue a career in genetic counseling:

The significance of genetics in medicine and public health should by now be painfully clear.... medical schools have begun ... to incorporate genetics into their curricula ... the establishment of genetic units for diagnostic purposes and of counseling centers.... A variety of newly acquired tools are being used ... a catalogue of human genes, presents a great advance for ease of reference to what is known about hereditary diseases. This should be followed by the development of computerized diagnosis in which symptoms could be given to a computer that would then retrieve from its memory bank the answer to whether the syndrome has a genetic basis, and, if it does, what the genetic basis is and what therapy may be possible.... clinical, laboratory, and therapeutic information could also be computerized. (p. 245)

I didn’t even know about the incredibly diverse learning opportunities I’d have in New York City; that turned out to be a bonus.

How did your coursework prepare you for your fieldwork and eventual career?

Everything I experienced at Sarah Lawrence eventually was incorporated into my career. The medical diagnosis and medical genetics courses were very important, of course, but the psychosocial and counseling courses with discussions were particularly valuable. I especially enjoyed discussions involving other classmates’ perspectives. My particular class was very special; most of my classmates are still friends and are active in the field in one way or another, including those who pursued M.D. or Ph.D. degrees in genetics. We were lucky; we graduated in the year that the National Genetic Disease Act was passed by Congress, providing funds for genetic counseling jobs all over the U.S. We took new jobs throughout the U.S., and in many cases we were the first genetic counselor(s) in a state. We kept in touch as classmates and got to meet each other’s colleagues at the national genetic society meetings.

We had a wonderful and interesting mixture of classmates for our discussions on various social and clinical genetic issues. Our international classmates, the first ones in the program, provided a larger world view to our discussions – Maya from India, Cheryl from Canada, and also Cecilia from a Mexican American family in El Paso, who always referred to Americans as “them”. We had older students who were changing careers and spent 3-4 years completing the program. In addition to their life experiences, they added the perspective of parents. Some classmates where married, while others were young New York singles who invited us to parties with their friends. Other classmates were from Seattle, Washington, D.C., Denver, and the states of California, Michigan, and Illinois. The class of two dozen was big in comparison to other genetic counseling training programs, which I think was an advantage. We also got to know the students in the classes before and after us. The challenges of the program proved to be an incredible bonding experience. Here it is 30 years later, and we are still excited to see each other, when we are at genetics meetings, or traveling. We share our lives, and care about each other.

Where were your fieldwork assignments? What type of skills/knowledge did you acquire through your fieldwork, which have aided you in your professional life?

We learned a lot in the classroom, but the clinic was where it all came together and we learned the nuances of the field. I was lucky to work with Rosalie Goldberg at the Craniofacial Clinic at Montefiore Hospital in the Bronx, with Nancy Calanan at the University of Connecticut Health Center, with Lorraine Suslack at Brookdale Hospital in Brooklyn, and with Dr. Jessie Davis and Gittel Silverberg at North Shore Hospital in Manhasset. I also worked on a project with Dr. Lillian Hsu at Mt. Siani Hospital, recording data for Dr. Ernie Hook’s seminal paper which is still used to quote the risk of having a child with Down Syndrome in pregnant women over age 35. I also worked on a small research project compiling family histories on patients with cystic fibrosis (CF) at St. Vincent’s Hospital with Muriel Gluckson and I was fortunately able to attend a national CF meeting where she presented the paper. Going to the meeting was very inspirational.

Among other things, I learned observation skills and dysmorphology from Rosalie (as well as tips for shopping at Loehmann’s), I learned empathic counseling skills from Nancy (and tips on juggling home and career), professionalism from Lorraine, who had a broad knowledge of the medical literature. Jessie was such a kind, smart, big thinker – it was wonderful to just be around her.

During the program, we were given freedom to explore other resources in NYC as well. I observed surgery with medical student friends at Mt. Sinai, and shadowed an infertility expert at his clinic in Manhattan for several weeks. I spent the summer with the incredible genetics team at Baylor College of Medicine in Houston, learning counseling skills from Dr. Vic Riccardi and Ellen Marcus, and finally understanding Bayesian analysis from Art Beaudet’s explanation. I met a lot of young genetics fellows there including Dr. Virginia Michaels, with whom, when she was at the Mayo Clinics, I collaborated on von Hippel-Lindau patients (a family cancer syndrome).

Resourcefulness and networking are an integral part of genetic counseling. Sarah Lawrence provided me with opportunities to build resources I needed to be successful. I met many other counselors and geneticists through my classmates’ experiences, as well.

I may be leaving someone out. So many people have shared their knowledge an helped shape my career. I’m thankful to all of them.

What was the focus of your M.S. thesis?

I studied all the craniosyostosis syndromes – Apert, Crouzon, Sathre-Choetzen, etc. I later worked in a craniofacial clinic here in Kansas City, so the depth of knowledge I gained was very valuable.

Where have you worked, and what have you worked on, since graduating?

Well, I’m still at my original job. I only planned to stay in Kansas two years, but I’m still here. I have had the great privilege of working with R. Neil Schimke, MD, a Clinical Geneticist. He has been supportive of everything a genetic counselor hopes to be and do. Not only is he a great clinician – as a Professor of Medicine and also of Pediatrics and a board certified Endocrinologist – he is empathetic with patients, and extraordinarily knowledgeable about the medical literature. He has encouraged me to write abstracts, apply for grants, present papers at national meetings. These have led to numerous co-author articles, as well as book chapters for the medical literature. He has also supported my involvement in all the patient support groups I’ve helped families start – National 5p- Society, von Hippel-Lindau Family (VHL) Alliance, Central Star Chapter of LPA, Greater Kansas City Marfan Syndrome Support Group, as well as earlier support groups for teens with cystic fibrosis, families with sickle cell anemia, and Huntington disease patients.

Individual families have shaped my career. A consult for a young girl with a brain tumor started my long standing interest in von Hippel-Lindau research, her family and dozen others participated in numerous research projects, eventually leading to discovery of the gene and subsequent development of a laboratory diagnostic test by others. Dr. Schimke and I write the online GeneTests.org profile for VHL, as well as book chapters. The early detection and management of the brain, eye, kidney, pancreas, and adrenal tumors in these families has been one of the most rewarding aspects of my work.

Another major part of my work has always been education activities. I received a several hundred thousand dollars National Science Foundation grant for a project to develop genetics workshops to K-12 teachers and later larger genome project funds (DOE) for a national project for high school teachers. Many other grants and projects have been funded for brochures, workshops, and small family research projects. Each has added a new challenge and dimension to my career.

I entered the online world 18 years ago when our University offered e-mail access to faculty. Years later, we were offered the opportunity to develop web pages. I maintain a large site, most referenced through www.kumc.edu/gec/support/. I immediately saw the utility of the Internet for geneticists, and each time I learned something new that I thought would be useful for other genetic counselors and geneticists, I submitted a workshop proposal for a NSGC or ASHG meeting to show colleagues. I did one at NSGC this fall on emerging technology that is useful in clinical, education, or other professional settings.

For each, I plunged into unknown waters – the courage I’m sure came from conquering NYC during my years at Sarah Lawrence. I always felt that once I had figured out New York City, I could go anywhere and do anything.

Have you/do you intend to pursue another degree or explore certification options?

I’ve been very happy with the opportunities that have been provided for me, my job continues to evolve, and I’ve not seen any limitations on my possibilities, yet. So for now, no, I’m very happy in my role as a genetic counselor, with the education projects I’m doing, and applying new technology in genetics setting.

What advice can you offer to people who are considering pursuing Human Genetics as a career?

Genetics will be the most rewarding career you can possibly choose, however, what you personally put into it will determine what it provides you in return.

Do you have any anecdotes or stories you would like to share that highlight your SLC experience?

There are a lot of funny stories…. many about getting lost (and eventually found) in NYC. Everything was a new adventure.

Graduate students didn’t live on campus, so I like many others I rented a room from a family. One room was with 2 others in the third floor of a large home just up the hill from downtown Bronxville. All I had to tell cab drivers when I got off the train at Bronxville was the “Owl House” and they knew where to go, as it was the former home of Brendan Gill, a well-known writer for the New Yorker, and apparently frequent user of cabs.

Once someone on the street offered me a free dinner in their Greenwich Village r restaurant just to fill the tables (relatives were coming). My friend and I ate sparsely, not believing it could really be free; unfortunately we left hungry and the meal indeed was without charge. That same night, we wandered into a movie, without any advance knowledge, and it turned out to be the Rocky Horror Picture Show. I hadn’t seen anything quite like that before – the costumes or the audience participation. So, it was quite an unusual evening.

About half way through the first winter in New York City, I decided I really needed a winter coat, which it turns out are, for the most part, already out of the stores by January. I ended up shopping in the lower East side – which was a wonderful bartering market back then.

I thought it was great that we could get twofer tickets on campus, for interesting new plays on and off Broadway. Just before I left New York, I went to see a new show, Chorus Line; standing room tickets were $5.

I was back in New York a few years ago, and I have to say, being there with a job and income is a lot more fun than when you are a student deep in debt.