By - Anzar Alam

Nowadays, genetic testing is becoming increasingly popular in India for the treatment and management of various rare and genetic diseases. There are over 7000+ known rare diseases, affecting approximately 8% of the world's population. Interestingly, 75% of rare disease patients happen to be children. Globally, over 350 million people are affected, with around 30 million in the USA, 30 million in the EU, and approximately 70 million in India. About 80% of rare diseases have a genetic origin, many of them being monogenic.

In India, doctors frequently prescribe genetic testing such as Whole Exome Sequencing (WES), Clinical Exome Sequencing (CES), and targeted gene panels to diagnose rare and genetic diseases in individuals. Beyond affected individuals, preventive and predictive genetic testing is also being conducted by genetic testing companies in India.

Your genetic data is unique and invaluable because it provides an intimate insight into your health, ancestry, and biological relationships. Genetic data has a permanence that sets it apart. It remains relatively constant throughout your life, providing a continuum of information from birth to old age.

The sensitivity of this information makes it highly personal and private.

1. Blueprint of Your Being:

Your genetic code is the intricate blueprint that defines who you are on a fundamental level. It carries the instructions for building and maintaining your body, influencing traits, and shaping your biological identity. Understanding your genetic makeup provides insights into your ancestry, potential health predispositions, and inherited characteristics.

2. Personalized Healthcare Insights:

In the realm of healthcare, your genetic data serves as a personalized handbook. It holds indications about your susceptibility to certain diseases, your response to medications, and potential health risks. This wealth of information allows healthcare professionals to tailor medical treatments, preventive measures, and wellness plans precisely for you, enhancing the precision and effectiveness of healthcare interventions.

3. Ancestral Roots and Heritage:

Digging into your genetic data unveils the rich tapestry of your ancestral roots. It provides a journey through time, revealing connections to diverse regions and populations. Understanding your genetic heritage can foster a deeper appreciation for cultural diversity and historical narratives, connecting you to a broader human story.

4. Informed Family Planning:

If persons considering starting a family, genetic data offers valuable insights into potential hereditary conditions. Understanding the genetic landscape can inform decisions about family planning, allowing individuals and couples to make informed choices for the well-being of future generations.

5. Scientific Discovery and Research:

On a wider scale, collected genetic data contributes to scientific research and advancements. Collective genetic information fuels findings about human evolution, disease patterns, and potential breakthroughs in medical science. By contributing in genetic studies, individuals play a role in advancing our collective understanding of genetics and contributing to the progress of medical research.

6. Identity and Self-Discovery:

Your genetic data is a key to self-discovery. It unravels the mysteries of your own identity, connecting you to a larger human story and highlighting the uniqueness of your genetic makeup. Exploring your genetic heritage can be an insightful and enriching journey, providing a deeper understanding of who you are and where you come from.

7. Transparency and Accountability:

In the ever-evolving landscape of genetic testing, transparency is key. You have the right to know how your genetic data is handled, who has access to it, and what it's being used for. This transparency is part of the accountability that organizations and professionals in the field uphold to maintain trust and integrity.

Privacy and Ethical Considerations:

Protecting Your Privacy:

When it comes to genetic testing like WES, your confidentiality is a top priority. Think of your genetic information like an own story – it's unique to you, and keeping it secure is essential. WES involves examining specific parts of this story, focusing on the genes that play a role in your well-being. Your genetic data is handled with care during the entire process, and stringent measures are in place to ensure it doesn't end up in the wrong hands.

Understanding Informed Consent:

Before engaging in any genetic testing, it's important to understand informed consent. This is your green light, your way of saying, "Yes, I'm ready to explore specific parts of my genetic makeup." It's about making decisions based on your understanding and comfort level. This step ensures that you are in control and fully aware of what the testing process involves.

Empowering Your Choices:

Your choices matter. Whether you choose to undergo genetic testing or not, it's about what feels right for you. This is your story, and you're in the driver's seat. The ethical attentions surrounding genetic testing highlight that your decisions should align with your values, opinions, and personal comfort.

In conclusion, your genetic data is important not just as a set of biological information but as an insightful tool for personal empowerment, healthcare customization, and a deeper connection to your pedigrees. Knowing the significance of your genetic information opens the door to a more cognizant and personalized approach to health, identity, and self-discovery.

In the ever-evolving digital landscape, the key lies in identifying the unique features of implementing robust security measures and ethical considerations to protect genetic data. Striking an equilibrium ensures that persons can navigate the digital age with confidence, and protect the aspects of their lives that matter most.

Remember, genetic testing is about unraveling the mysteries of our genetic code, and you're in control of your genetic story!

References: 

Organization For Rare Diseases India

https://rarediseases.mohfw.gov.in/Home

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The views expressed in this article are solely those of the author(s) and do not necessarily represent the official stance of BiotechVille. The content is opinion-based and not intended to malign any organization or individual. BiotechVille does not guarantee the completeness, accuracy, reliability, suitability, or availability of the information in this article. Any reliance on such information is at your own risk. BiotechVille reserves the right to edit or remove content at its discretion.