The Gene Factor – April 2016

In recent decades, the amount of Genetic knowledge and its rate of growth have exploded. Let’s take a look at a career in genetic counselling which deciphers this code.

Apart from counseling of the mind, body and spirit; there now happens to have evolved a branch which deals with counseling of the genes. The National Society of Genetic Counselors (NSGC) officially defines genetic counseling as the understanding and adaptation to the medical, psychological and familial implications of genetic contributions to disease. Genetic counseling is the process by which the patients or relatives at risk of an inherited disorder are advised of the consequences and nature of the disorder, the probability of developing or transmitting it, and the options open to them in management and family planning.

MAJOR CHALLENGES FACED
Gayatri Iyer from the Board of Genetic Counseling, India says that, “One of the most major setbacks faced by Genetic counselors is their code of conduct of non-directiveness. The practice requires them to be diplomatic in approach and enable their clients to make an informed decision without introducing any bias. This is contrary and challenging to the trained minds which believe “the doctor knows the best!” The newfound responsibility makes the clientele see the situation in a different light altogether. Though this decision making process can be achieved with minimal discomfort for lifestyle related disorders, it becomes tricky in scenarios dealing with family planning and reproductive decisions.”

REQUIREMENTS FOR AN ASPIRING GENETIC COUNSELOR
“The academic requirements are Post graduation in any of the life science branches with credits in Genetics, followed by a Genetic counseling training programme. Apart from the certifications, the essential requirements for the profession are presence of mind, patience, strong interpersonal social skills, flexibility, non judgmental attitude and understanding of the fact that each individual is wired differently, so is their perception of the condition you are dealing with”, says Gayatri.

INSTITUTES OFFERING A COURSE
* Board of Genetic Counseling, India

* Indian Medical Association
* The University of Michigan
* Case Western Reserve University

Payal Manek is a Genetic Counsellor with immense professional experience and is currently working with Strand Life Sciences. She has independently counselled more than 2000 patients with hereditary diseases and has been instrumental in saving several lives and helping families.

Ms. Manek has worked as a Cancer Genetics Counselor at Tata Memorial Hospital- ACTREC where she led the establishment and implementation of guidelines for genetic screening, syndrome identification, genetic testing and management for high risk cases.

WHAT MADE YOU CHOOSE GENETIC COUNSELLING AS A CAREER AND WHAT DO YOU LIKE MOST ABOUT IT?
Since childhood I was passionate to get in to the medical field and be a psychiatrist or psychologist. Based on my scores, I got admission into a Bachelors program in Biotechnology where I got introduced to genetics as a subject. It was surely one of the most interesting subjects. In one of our Applied Genetics workshop, I heard about a Master’s course specializing in Genetic Counselling. This seemed to fulfil my dream of talking to other people, understanding them and helping and guiding them. Plus being a part of the medical fraternity was an added attraction. Undoubtedly I like hearing the stories of the patients, their struggle and deep rooted family emotions. I have deep empathy and compassion and that is the main aspect of my profession that keeps me motivated and excited.

WHAT ARE THE MAJOR DUTIES OF A GENETIC COUNSELOR?
* Understand and interpret a patient’s medical and family history
* Identify a syndrome, disease or condition in the family
* Educate about inheritance, testing, management, prevention, resources and research
* Offer detailed counseling to promote informed choices and adaptation to the risk or condition
* Avail appropriate genetic tests
* Liaison between the patient, physician and the lab

WHAT IS THE MOST CHALLENGING ASPECT OF YOUR JOB?
Hearing the pain and struggles of the patients and their families on a daily basis and empathizing with them takes a toll on one’s own energy and moods. Many of us often burn out or get too deeply involved in the issues and concerns of the patient’s and their family. Hence it is a routine process for counsellors to de-stress by sharing and communicating with our peers. We also try to maintain a healthy distance from patient’s emotions. Also with some patients, it is a challenge to put information through to them because of language, perception or psychological barriers. Some patients can be very hard, aggressive or rude. Managing the vast variety of people is quite a challenge.

WHAT DO YOU WISH YOU HAD DONE OR KNOWN DURING COLLEGE THAT MIGHT HAVE BEEN BENEFICIAL TO YOUR CAREER TODAY?
I am glad I attended as many workshops, training and conferences as possible. It is truly because of those interactions that I am where I am today. There are no regrets but learning is a never ending process. I continue to learn from all the doctors, colleagues and other hospital staff that I meet on a daily basis. Getting the right exposure and environment is very important. And I have been very lucky on that front.

CAN YOU DESCRIBE A TYPICAL DAY AT WORK?
I work at the Cancer Genetics Clinic in various hospitals across New Delhi. My schedule for various clinics is fixed and mostly there are appointments scheduled in advanced. During a typical counselling session, I begin with rapport building, introduction and understanding the background of the patient and their family. Then I take down details about the family and draw a detailed pedigree, identify a syndrome and estimate the risk. Then I suggest the appropriate genetic test, Pros and Cons and possible outcomes of testing are discussed. Patients take an independent informed decision if they would like to get themselves tested or not. If they wish blood/saliva samples with appropriate consent is taken for genetic testing. A summary letter of the discussion is emailed by end of the day. Post that, I meet the clinician to discuss either their cases or spread awareness and information of such tests. I am involved in many other tasks like developing new test panels and single point customer service to the referring clinicians. We also have regular projects like preparing for upcoming workshops or seminars and mentoring of junior colleagues among others.

WHAT ADVICE DO YOU HAVE FOR STUDENTS CONSIDERING A CAREER IN THIS FIELD?
It’s a good career option, especially for women because empathy comes naturally to them. One should take up this profession not just because it is a career option but do so only if you have an inherent skill, patience and the empathy to deal with patients and their families.

 

Volume 5 Issue 10