In this chapter of Career Stories, we bring you the journey of Parichay Rao S.R. who is currently a BGCI-certified Senior Genetic Counselor at LifeCell International Pvt Ltd, South region. Previously, he was one of Hyderabad’s first onco-genetic counselor and advocate. He holds tremendous devotion to his field and aims for a work-life balance by indulging in finances or an occasional road trip!
In this insightful chat, he speaks at length about his nature of work and myriad of experiences that have transformed his career as a genetic counselor.
What does a typical working day look like for you?
Initially, I started as a clinical, oncogenetic counselor but have recently shifted to the role of a clinical laboratory genetic counselor as I wanted to learn and explore that. Officially, my day commences at 9:30 am and ends at 6:30 pm. At times I also take sessions as early as 6 am for telegenetic counseling. No matter where you work, the client’s requirement takes priority.
Besides this, as a senior genetic counselor for the south region, I try to be online and available to take queries and/or support the sales team, who, by extension is associated with the clinicians. This is essential to prescribe the right test for the patients and to avoid an adverse cascade of events.
How was your experience as a cancer genetic counselor considering that in this specialty, as opposed to others in genetic counseling, one is associated with families for a prolonged period of time?
Genetic counseling 101 begins with “rapport building” with the family. In cancer genetics, relationship building begins at the first or even the tenth visit. The genetic counselor has to keep putting in the effort to gain the family’s trust. A typical genetic counseling cycle in cancer is anywhere between day 1 of the visit to 6 months, which may include the time for their management/treatment process (chemotherapy, radiotherapy, surgical advice) as well.
To simplify, there are three modalities of allied services in cancer genetic counseling – an oncopsychologist (to deliver difficult-to-accept sensitive information or discuss certain taboo topics), a nutritionist (they know how to integrate the patients’ requirements along with support that the carer can provide), and the genetic counselor (provide support and information regarding surveillance, management, risk assessment, and genetic testing).
The role of an onco-genetic counselor gave me an insight into preventative genetic counseling along with the utilization of essential tools such as taking family history and analysis.
For instance, a 60-year-old female with cancer comes for counseling. On taking her family history, I find that a 19-year-old female (from that family) can take the HPV vaccine as a preventative measure. But, the family might be hesitant to accept the suggestion of the vaccine as it has to be taken in 3 doses and is also expensive. Hence, in follow-up sessions, I can highlight the benefits of taking the vaccine. Therefore, a continuous cycle of counseling is advantageous to more than one individual in the family. Similarly, with a proband currently undergoing treatment, eventually, I might introduce the idea of testing for other at-risk family members, based on the guidelines.
I had a great experience pursuing genetics in cancer, contributing to the field, and creating a difference in health care in my own capacity.
What is the role of ‘counseling’ in cancer genetic counseling?
At times, breaking bad news is one thing, and handling stages of grief is another. This is where an oncopsychologist comes into play. There is a term we use – “carer’s burden.” It can be defined as the load borne by a person who cares for chronically ill, disabled, or elderly family members, and in this case, a cancer patient. Genetic counselors, in association with oncopsycologists, must be sensitive to their situation and support them as much as possible. For example, the role of a nutritionist is similar. With experience and association with the family, they understand the family dynamics in terms of who has to cook and provide the recommended nutritious food which makes it a vital position in healthcare.
Can you compare and contrast your responsibilities as a junior and now, as a senior genetic counselor? How has the growth been?
In my previous job as an oncogenetic counselor, it was tough to get a genetic counselor since the field is so niche and requires immense proficiency. For five long years, I contributed to multiple centers all over Hyderabad. I was playing the role of a junior and a senior genetic counselor in my own capacity. I started with a meager salary but my outlook was to learn and explore. I would speak to genetic counselors and other professionals outside of the organization – networking and enhancing my command of the subject.
Currently, I am a senior genetic counselor heading a team of six members. This hierarchy exists only on paper and not at work. In my team, we are all equal – “If I know, they know; if I do not know, they do not know.” I try to create a conducive environment and encourage the exchange of ideas. This improves dependability and the work trumps authority. For the team, I am an individual who is here to learn and practice genetic counseling just like them, alongside them. I always try to remind myself of my journey and where I came from. The moment one loses this, one loses everything.
How do you manage the psycho-social aspects of genetic counseling in India with respect to patriarchy, gender sensitivity, ethnicity, etc. ?
In my practice, I am particular about having the couple together for counseling, even if it is over voice/video call. When we start addressing them as a unit, it helps them work together. Similarly, the head of the family cannot be the only one making a decision that influences a single member’s health.
Patriarchy manifests from both aspects. To illustrate, when a couple is currently pregnant – the father might probe that the mother is the one responsible for any problems arising. Or, the mother might suggest that she and the genetic counselor talk separately so she can express her concerns, which in the presence of her husband or father-in-law may be hindered.
It is important to break this dynamic during the initial sessions via conversation. I ask them to explain what happened in their own words. Likewise, when I talk about the future of their child and the implications of a genetic disorder, it gives them a practical insight into how they will have to manage – it activates the parental instincts and any discordance in the couple tends to end there as they see this as a team effort.
Now in case of Duchenne Muscular Dystrophy (DMD), for example, males are affected and females are carriers. The family tends to focus less on the therapy and supportive care for the affected child; but rather on blaming the mother for passing the disorder. Again, society also often encourages the couple to try for another child who has an equal probability of being affected.
In such situations, hardly anyone thinks of what the mother is going through. They frequently forget that she alone is not responsible in a pregnancy, giving way to prejudices and stigmas. There are various Assisted Reproductive Techniques (ART) for the same, and if the couple lets go of societal conditioning and bias, they can channel their efforts into seeking help from genetic counselors and reproductive specialists.
A principle followed in this field is non-directive counseling. Can this principle be followed with the aforementioned social stigmas and prejudices?
Non-directive counseling is an approach that aims to offer all available options of testing with pros and cons and encourages the individual/couple/family to make an autonomous decision.
Directive and non-directive counseling, both work in India. I would say that when you have ample time for counseling and management, be non-directive, but when you see that there is a possibility of more harm than good, then being directive helps the couple to make their choice.
To exemplify – if I suggest prenatal testing to a couple who would benefit from it, and they opt out and the pregnancy does not work out, they will probably return, but they will be emotionally broken. Now in this situation, if the testing had been done, I would have had a road map to support the family and they would also have had some clarity. It is essential to be mindful of their needs and offer genetic testing based on ethics as far as possible. In such a scenario, a direct approach is helpful.
Sometimes giving too many options also makes the situation tough. In a country like India where literacy rates are inherently low, making a decision based on scientific facts can be difficult to comprehend and abide by.
Have there been any recent changes in policies related to genetic counseling and/or testing, nationally/internationally?
For instance, policy changes related to the inclusion of genetic testing of rare disorders in health insurance. Considering that it is not included in health insurance schemes, currently in India, and that individuals seeking help come from diverse economic backgrounds, are there any government-funded schemes to fill this gap?
With reference to the GINA act (Genetic Information Non-discrimination Act), in Hyderabad, we are in conversation with clinicians to include demographic-based prevalent disorders like Thalassemia and Sickle cell anemia in the insurance policy that would cover testing. That said, there has not been much progress. In India, policy changes and stakeholders advocating genetic counseling still have a long way to go.
For example – the drug for Spinal Muscular Atrophy (SMA), a known genetic disorder, costs crores. This is where sensitization and awareness about genetic counseling come into play. There is less stress in testing the fetus prenatally than in funding a cure/treatment for the disorder after the baby is born.
Nonetheless, depending upon the ailment and the geographical location, there can be various sources of funding support. For example, in Hyderabad, there is Helping Hand Foundation. There are also several disorder-specific funding and support groups nationally and internationally. Even labs can provide discounts if those in need can share the reason for the request of a subsidized test.
The recent introduction of NPRD (National Policy for Rare Diseases), in 2021 has provisions for the promotion of research and development for the diagnosis and treatment of rare diseases.
How do you keep yourself updated about current clinical trials, new research, and current affairs?
I am more of a digital person. My strong suit is searching the internet efficiently. Me and my brother (who has done his Ph.D.) have a knack for exchanging ideas and information regarding scientific advances. As children, we both wanted to embody the personality of a “mad scientist” working with beneficial research on the front and performing crazy experiments in the backyard (like creating an eight-legged peculiar organism.)
My method of updating myself is to browse thoroughly through Science Direct articles, and Nature publications, and download these papers as well. I have a folder on my desktop namely “Ph.D. to be” that houses papers I have found interesting.
I also believe in sharing the information that I have collected. It makes for great conversation triggers when you meet someone. As I said, networking is very powerful!
Along with this, how do you feed your interests like your curiosity towards the share market and finance?
Growing up, my family was not affluent. My siblings and I have been in a hostel since childhood. I have not asked my parents for money for over several years.
I took it upon myself to educate the self on how to invest and to understand how banks work. Financial literacy makes you independent. At one point, you will have space to make mistakes, learn from them, and still be financially secure.
To put things into perspective, imagine someone has to pay Rs. 30,000 for a genetic test. That is someone’s entire month’s salary. In this case, would you think of the money or the test that will help your health? No one can teach you finances in school or through a textbook. You can learn it yourself, step-by-step.
How do you see the future of genetic counseling in India in terms of the following-
Acceptance by families and clinicians toward the field:
The future is now. It is already here. The families are aware of the field and are accepting to invest in testing to know more about their health. I even get queries from a salesperson on how he can get into genetic counseling as they see a huge scope in it. Similarly, clinicians now cut to the chase and directly lead with “What has to be done now?” The future is here, we just need more genetic counselors in number.
Students pursuing this field:
There is great scope for a job and to make a difference in this field. There are eminent educational institutes in India offering world-class education in genetic counseling. Educate yourself first, make mistakes and learn from them. Begin your journey in a clinical setting where you can learn more. Keep track of other companies as well, it will come in handy when you wish to move jobs. But wherever you are working, be loyal to them and work hard and keep aside the monetary aspect. It is a misconception that the salary is meager.
If you have pursued your education outside of India and have returned to practice here – you will feel a massive disparity in salaries. But fear not, just be humble and allow others to know you and your work. You will be noticed for your expertise. Network more, and marinate yourself in the Indian demographic and protocols.
Statistical data on incidence/ treatment/ management of disorders:
For oncology, there are GLOBOCAN studies, ACMG guidelines, NCCN guidelines, ICMR guidelines, and MDCRC research work in x-linked recessive disorders. Apart from this, NCBI is a global ocean of knowledge. MERD, India founded by Vikas Bhatia is also involved in the advocacy of metabolic and rare disorders. Similarly, ORDI is also involved in spreading awareness and performing research for rare diseases.
Recently, even research labs in India are sharing their data as diagnostic yield. India is definitely catching up and collaboration is everywhere – you just have to plug and play!
