In this chapter of Career Stories, we bring you the journey of Dr. Dipanjana Datta who is an illustrious pioneering genetic counselor in India- a Consultant Genetic Counselor at Apollo Hospitals and a faculty at Calcutta University for Clinical Genetics. She is the State Co-coordinator (West Bengal) for the Organization of Rare Diseases, India. She carries with her 14 years of experience in Human Genetics and has an imminent interest of pursuing research in the same field.
In this candid chat, she takes us through her journey and explains in depth what a career in genetic counselling looks like.
During the years 2012-2014, when you were doing your Post Doctoral Fellowship (PDF) in the Virginia Commonwealth University (VCU) Health System, India was expanding its Genetics landscape simultaneously. What introduced you to, and encouraged you to enter this sphere of Genetic Counseling specifically?
Out of the two PDFs (that I have), my first one was at Oregon State Health University (OSHU) where I was working on neuromotor junctions and muscle development. My mentor there headed a clinic on neuromuscular diseases and the project was sponsored by a group called Shriner’s which is a Jewish community program. As part of the PDF, I had to gather patient information and history. He thought I was good with communication and with my knowledge of genetics, I would do well as a Genetic Counselor. Consequently, he asked me to enroll in the program. I shadowed various people at the clinical genetics department there and entered the course for the same. Post this I joined VCU, where I was working on brain development and transcriptomics, and completed my internship at the children’s hospital.
Currently, you work at various organizations as a Genetic Counselor. How do you manage this in terms of work and clients?
I follow a very rigid timetable, where my work hours are predetermined and allotted accordingly, around the week and month.
What are the innate and acquired skills required to become a Genetic Counselor and practice as one?
Innate skills – Good communication skills, including being a good listener, being passionate (about your topic), having patience, empathy and a non-judgemental attitude. Possessing the art of science communication to deliver complex information to patients is an added asset.
Acquired skills – the knowledge of genetics itself, continuous education and upskilling in the subject, getting acquainted with the cultures and laws of different places and developing counseling skills. Experience plays a huge role in shaping the thought process of counseling. Hence, the more experience you have, the more clarity and control you have (regarding your role as a genetic counselor). Staying up to date on clinical trials and maintaining a network of doctors are also some other skills that a genetic counselor would need to inculcate or acquire over time.
Talking of research, is there a scope for it in the field of genetic counseling and how would it impact the genetic counselors, clinicians, and consumers (aka the patients)? (Research in terms of new genetic findings, population genetics, statistical data validation, etc).
There is immense scope for research in various aspects. Epidemiological studies on disease incidence, mutation profiling about diseases, developing the Indian disease databases, natural history, psycho-socio-religious aspects of common genetic diseases, impact, and response to counseling for families are a few facets to look at. This can help in developing better screening tools and having India-specific disease incidence statistics. Hence, developing distinctive policies for the screening and management of genetic diseases at affordable prices is the need of the hour.
Early detection and management would improve the quality of life for families. For a genetic counselor, proper guidelines can be outlined to counsel families from different communities based on epidemiology, aiding in predicting and discussing the prognosis and the natural history, genotype-phenotype correlations, and improve the reporting of the Indian variants which are majorly VOUS (Variant of Unknown Significance – wherein the variant of a gene that is manifesting the disorder is genetically unclear).
A major revolution would be the reduced cost of tests and the decrease of unwanted tests. Research would also pave the way to investigating which diseases need more attention and drug development. Government can prioritize research in such diseases for refurbished drugs, clinical trials, and most of all, proper policy development and building support.
What research is currently underway in the field of genetic counseling, in India and/or globally?
Globally, a lot of research is going on in the aspects discussed above. Many patient support groups are driving incredible research and even encouraging the government to expedite trials. Support centers for management, hospice, and adult patient care are also being established. Artificial Intelligence is also coming up in a big way to support such research.
In India, things are in the nascent stage. The CRISPR technology Feluda test from India was invented as an equivalent to the American SHERLOCK technique and was used in the detection of Covid. But we are still a long way from developing indigenous tools. Recently, due to the rare disease policy, a number of research grant initiatives by the government (DBT/DST/ICMR) for orphan diseases and drugs have been announced, which has boosted scientists to submit proposals on off-label refurbished drugs. However, everything is not organized and there is discordance between the treating doctor and the scientist. In India, most genetic counselors are unaware of their role in research as they are practicing for genomic companies where research is not the priority, and they are often not allowed to access large-scale data
How do we initiate awareness about genetic counseling as a career choice amidst the student fraternity at the high school and undergraduate levels?
Initiating awareness comes easily if they have the subject in their curriculum. For instance, I teach clinical genetics to students of zoology, physiology, and biotechnology. This is approximately 20 marks out of their entire syllabus at Calcutta University where I take 12 classes in one semester. This itself creates awareness and generates interest in most. I feel visiting schools and colleges and sharing experiences can promote interest but role models are needed, who can inspire and ignite young minds. However, it is also my opinion that unless we have a pan-India body that can have genetic counselors’ employee rights and registration, this will not go a long way. The Board of Genetic Counseling, India (BGCI) certification is not valid all over the world, and hence, genetic counselors trained in India, would not get any global opportunity. Thus, efforts need to be taken to promote acceptance of genetic counseling, and then awareness would follow automatically.
What are your roles and responsibilities as the state coordinator of West Bengal for the Organisation of Rare Diseases? How does advocating for rare disease awareness/rare disease screening aid those who might require genetic testing and/or counseling?
As a coordinator, my role is to generate awareness by holding camps and CME (Continuing Medical Education) among doctors, RTM (remote therapeutic monitoring) with patients and families, collaborating for referrals, understanding and helping them find those referrals, and developing a network of super-specialty doctors who would be able to support the patients and their families. Another segment of responsibilities is to generate CSR (Corporate Social Responsibility) funds, or have beneficiaries who can help poor patients, write and communicate on social media platforms, and also reach out to schools, teachers, and offices for support. Help is also offered in getting the disability certificate, and co-ordinating care in rural areas where all facilities might not be available. Along with this, I also aid in seeking trauma management and support when needed, voicing the needs of families to the state health and finance authorities, helping in crowdfunding, and of course, genetic counseling. Language is a barrier I can cross as I know most languages of this region and hence, it’s easier for me, to communicate with patients and to understand their issues.
