Personal Genome Analysis

It is called "Personal Genome Analysis", a screening process of genes through which an individual's risk or probability or predisposition of getting specific diseases in future are predicted well in advance so that the individuals with the help of their treating doctors can take necessary precautions. 

That is what the brochure handed over to me said. What precautions can be taken and how? The brochure didn't elaborate much on that. My first reaction was, probably another of many scams going on in the healthcare "industry".

I was at the hospital for one of my routine check ups. I completed the first stage of the process and went around the hospital scouring for a comfortable place to sit. I had a couple of hours of waiting until the next procedure. I came across the Executive Health Check Up area which looked quite beckoning. It was quite well furnished with plants all around, and comfortable sofas, almost like a reception of a star hotel. 

I saw a rack at the entrance filled with all sorts of brochures. As I stood there in front of the rack reading the various health check up packages on offer, a young lady approached me asking me if I would be interested in health related information. I said "yes, why not" as I had nothing to lose, I had plenty of time on my hand. To covey that there would be no obligation from my side, I let her know that I was just looking around.

She showed me a brochure that explained various health check up packages with cost, listing various tests included. As I was going through the details, she took out another pamphlet which read "DNA Personal Genome Analysis". She was excited to tell me that this was their latest, most invaluable offering, which in her opinion, every individual, especially children and youngsters, need to take. 

It was a comprehensive test that predicts well in advance the predisposition of an individual to various diseases in future, well in advance. Then she took out a folder from a courier cover. It looked like a photo album with beautiful hardbound covers and thick pages. She said it was the Personal Genome Analysis report of one of the doctors in the hospital. Perhaps to highlight confidentiality being followed, she said that the report was sent to the personal address of the individual by courier service. 

The first thing that struck me was, how come the report of one of their own doctors was in her hands. Information about an individual's diseases, especially certain diseases like Sickle Cell, are highly confidential. Either she was lying about the report belonging to one of their doctors or they go to any length just for commercial advertisement. Either way, I found it quite bizarre. 

She gave me the brochures and told me to go through them at leisure. I selected a comfortable seat and settled down to go through the Personal Genome Analysis brochure. It is a test performed on the sample of an individual's saliva or blood. The test provides analysis of 62 various conditions to assess disease predisposition of the individual, to diseases including Alzheimer's disease, Crohn's disease, Schizophrenia, Thalassemia, Sickle Cell disease, and cancer affecting various parts of the body.

After reading through the brochure, many questions started rising up in my mind. How will advanced knowledge of a future disease help the individual? For example, if the report showed someone that their child had a predisposition to Alzheimer's Disease, how does it help them? As the report does not say at which point in life the individual may get the disease, when should the individual start taking precautions? Instead of mental suffering at a future date, will they and their families not have a life long suffering? 

As I sat there wondering about it, it brought back memories of a friend I had in college.

This friend's house was on the way from my home to my college. I used to visit his home quite frequently on the way back home from college. His mom would serve us a hot cup of tea with interesting maharashtrian snacks. 

His dad was in a senior managerial position in the Accounts Department in the Railways. He commanded quite many staff in his department. By nature, he was a very quiet and reserved person. Whenever he happened to be at home on my visits, he would nod his head with a smile in response to my greetings and inquire about my family, about my studies. 

Then came a time when I started seeing him quite often at home, sitting outside the house, very quiet, withdrawn, brooding, lost, staring into space. My friend told me that his dad had retired from service recently and since then there was a marked change in his behavior, on the negative side.

One day, I realized that my friend had not been coming to college for quite many days. I went to his house wondering if he or someone in his family had health issues. As I approached his house, I found his house was locked. On inquiring with the neighbors I was told that my friend's dad was not well and he was admitted in the Railway Hospital. They did not tell me what exactly was the sickness but from their hesitation, I guessed it must have been something serious. 

I visited the hospital the next day. After searching through the various wards, I could finally locate my friend. He looked quite sad and worried. I inquired about his dad's health condition. He just gave me a faint smile, dropped his head and led me to the room where his dad was being treated. What I saw there, shook me up completely.

My friend's dad was lying on a cot, his hands and legs were bound to the sides of the cot. Worse thing, he was making gurgling sounds with tears running down his cheeks, gnawing at the bindings around his arms, trying to free himself. 

I was stunned, my mouth went dry and I could feel a lump in my throat. Looking at him, I wondered, was he the same man I knew before, the man with authority, the man in a high job position who commanded respect from many staff reporting to him. 

I couldn't take the scene for long. As I came out of the room mentally disturbed, I asked my friend what went wrong. He said no one knew exactly what the problem was. His dad started behaving differently soon after his retirement from the service. Before they could realize it, he had become depressed, aloof and started hurting himself. It became quite uncontrollable for the family. They had to seek professional medical help. 

I just stood there, looking at my friend, unable to quite grasp what I just saw and heard. With a heavy heart I bid goodbye to my friend and left the hospital. I felt like all the strength had drained out of my body. Oh God, why do such things happen! I knew their family for a long time. They were a loving close knitted family. I have not heard them say a harsh word or utter an abuse. Then why!!

After that, my friend had not been the same person that I knew before. He was aloof and kept to himself most of the time. I tried my best to cheer him up or get him to his old self. It didn’t help. I went to his house several times but it was not the same as before. I couldn't see his dad anywhere, so guessed there was not much improvement in his health situation. Invariably I would feel quite awkward as there wasn’t much conversation happening and then I would leave. After we finished college, we totally lost contact with each other.

Another similar case comes to my mind, that of an acquaintance. This man was a senior manager in one of the famous banks in Southern India. By nature, he is quite an amusing person, always had something funny to say about any situation. A few years ago he retired from the service. After that, he used to provide his services to the banks as a consultant. He drove his car by himself. His retired life appeared to be quite content and going in the direction.

Slowly, over a period of time, a marked difference started appearing in his health. First, he stopped driving his car. He traveled by hired driver or taxi. Then faint tremors started in his hands. And then his speech started to slur. Within months, his health took turn for the worst. Good thing was, he did not become a recluse or bitter about his ill health. 

He continued to socialize.  Whenever we gathered for some social event, I noticed  expressions of pity n people's faces. It became very difficult to converse with him, as his speech was not clear. I do not know what exactly was causing problems in his health, but there was mention of Parkinson's disease. Personally I think it is Essential Tremor Disorder. Whatever, the reason, it is quite sad that such a thing could happen to a person of happy and humorous nature.

I could not understand what caused such a things, stripping a person of all dignity. People offer many reasons, but no one could say with certainty what leads a person to depression or dementia or many other such conditions. Alzheimers and Parkinsons were not such popular diseases spoken about in those days. People invariably considered it as an act of voodooism or black magic brought upon by some enemies, who invariably turned out to be the neighbor or a jealous member of the family.

Looking back, I wondered, if something like "Personal Genome Analysis" was available in those days and if my friend's dad's family had prior information about his dad's predisposition to depression or dementia, could they have been better prepared? Could they have avoided the shock, the pain and the suffering? 

It is said that acceptance is the first step to make things easier to face or handle or manage difficult or painful situations. Perhaps, it might have helped them! The family could have been well prepared and planned my friend’s dad’s retirement better.