Genetic Counseling: More Advanced Means but the Same Ends

by Brianne Baier

Elsa Reich is an alumna of Sarah Lawrence College’s Human Genetics Program and has been a genetic counselor for 35 years. She currently works at NYU Langone Medical Center and shares her knowledge and experiences with human genetics students by teaching a course at Sarah Lawrence College and has had more than 175 students rotating with her.

How did you discover genetic counseling?
After attending three years of college I was married and had been accepted to medical school. I became pregnant in 1956 and could not go to medical school because at that time you weren’t allowed to be pregnant while in medical school. I went on to have three children and lived in Chicago with my family until 1968. I was scheduled to start graduate school that fall when my husband came home to tell me he had been transferred to New York. I picked up the New York Times and read an ad about a genetic counseling program at Sarah Lawrence College. I thought it sounded interesting, although I really didn’t have a clue about what genetic counseling was, so I applied to the program. I was notified that I was put on the wait list and I was not very happy about that. I eventually was accepted that year and when I asked why I had originally been wait-listed I was told it was because I had asked what kind of salary I might expect to earn. This was considered an inappropriate question because being in the field was supposed to be honor enough.

How did you begin your career in genetic counseling?
In 1974 I started working at NYU and felt like I didn’t know anything. I did a lot of research on my own. At that time an amniocentesis didn’t exist, there was no first trimester screening, and there were not a lot of patients to see.

In 1975 I became the genetics consultant in our craniofacial clinic. Sometimes I saw patients with a doctor, but it was not uncommon that I made the diagnosis. Much of the time I was free to do whatever I wanted. I helped the OB-GYN department develop the amniocentesis program and established a screening program for Tay-Sachs. I began counseling patients regarding amniocentesis although I had never observed anyone else doing it.

Looking back, I remember that chromosomes in cultured cells looked like blobs. The chromosomes couldn’t always be matched up because there was no banding. Now you can analyze chromosomes by high resolution, by using FISH and with microarray. The diagnostic process has dramatically changed, and now individual genes are known and hundreds of different disorders. There were very few genes known when I started out and we frequently estimated risk by using Bayesian analysis.

Over my 35 years of being in the field, I have worked in prenatal, neuro-muscular, craniofacial, pediatrics, adult, and cancer genetic counseling; I very much enjoy the cancer genetic counseling and the pediatrics counseling which I do now.

What do you like most about your job?
I love the science and the people. People are endlessly interesting. If the science and the people didn’t continue to excite me, I would probably retire. I also like to teach. I have been lucky that I have been able to do many of the things that I enjoy.

Why do you still want to do genetic counseling?
I still love the science and the people. It is very dynamic and I learn something new every day.

How has genetic counseling changed since you first entered the field?
At the time that I graduated, genetics was not well known. No one knew what a genetic counselor was and therefore, no one wanted to hire a genetic counselor. Many people started out volunteering without pay and eventually began to be paid for their work. Genetic counseling was a brand new field and there weren’t any testing options available yet. Genetic counselors played a big role in being advocates for genetics and getting it on the map. Genetic counselors have become integral parts of genetic medicine.

In the 1970s many genetic counselors didn’t work with trained geneticists. There were very few geneticists. They would learn as they went along. Since there was so much unknown in the field genetic counselors would essentially create their own roles.
I believe the role of the genetic counselor has not changed dramatically over time because even though the means are different, the ends are not.

Has there been a change in the field that you think has bettered it?
The introduction of genetics into almost very field of medicine is remarkable. There are so many specialties now and it is important for many health professionals to know about genetics. It becomes the responsibility of any health care provider to recognize genetic disorders. Everyone needs to have a basic understanding because there are patients lost in the shuffle. Genetic counselors are playing a big role in the education of other medical specialists.

Where do you think the field of genetic counseling is headed?
We need to continue to educate the public about genetics and the implications it has for them. Hopefully a time will come when people with a genetic disorder won’t be stigmatized but will be treated equally.We will also be finding treatments for some of the genetic disorders that we now recognize.

What advice would you give to someone who is considering becoming a genetic counselor?
Take the opportunity to shadow one or more people. Talk to people at more than one genetic counseling program and talk to people who are genetic counselors in different specialties and who are of different ages. Try to appreciate what the benefits and drawbacks may be. See if what they do is what you might want to do. Clinics can differ from one another; the responsibilities may differ; the philosophy may differ from clinic to clinic. There are “non-traditional” roles that genetic counselors have assumed. See if anything appeals to you.

I think that you need a balance. Be able to separate work from your life. You should be able to talk to the patient and be able to sleep at night. If your patient’s issues become mundane, maybe you should do something else.

What is the most important lesson you want genetic counseling graduate students to take from your teaching?
Try to understand the patient and don’t make judgments about them. Learn as much as you can about the patient and condition, and care for the patient with integrity and respect.