Ethical conundra in human genome research

To know more. This is what motivated scientists to initially conceive the idea of the Human Genome Project. As they mapped all the genes in our 23 chromosomes and tried to figure out how genes work, how they are regulated, which gene is located where and is responsible for what, they foresaw the potential applications of their knowledge.Sequencing the human genome could enable them to point out potential risks in patients, formulate new therapies for cure and understand evolution, amongst several other benefits.

The results of the HGP are impressive: patients at risks for a debilitating disease can be informed before its onset, genes that cause cancer and other mutations can now be studied with greater insight, molecular mechanisms that govern the expression of genes can be understood etc. The knowledge that we have now, is empowering.

But power tends to corrupt. The apprehension that underlies the ethical questions that have been raised throughout the timeline of the HGP is that our knowledge may give us the enormous power of being able to create and change human nature, something we may not be capable of handling. We may have begun with a noble intention, but will we stick to it? We may have ventured out with a determination to change the world for the better, but will this turn into selfish economic greed?  There will always be questions that we cannot answer with complete certainty. But the lack of sure answers should not stop us from continuing to question and find out.

We cannot stop probing the human genome because it gives us unprecedented power to change others’ lives. We cannot restrain ourselves and not know. We cannot not reach out and struggle with our perception of nature and of God as more light is shed on our genetic and biological complexity.

Human gene modification is obviously not the same ballgame as the biotechnological modification of cow genes to produce better quality milk or plant genes to confer them with resistance to diseases. As more genetically engineered products are commercialized in the coming years, scientists must remain cautious of the enormous social implications this can have: the revolution that comes with understanding the human genome may lead to genetic superiority based on economic superiority. It may narrow down to genetic weeding and ‘perfecting’ the human genome. Who will define this perfection? Will the idea of a perfect genome change as fast as a fashion fad? Will wanting a particular genotype be the same as wanting a luxury car?

We are told that our genes are our identity. From that tiny mole on the neck, that aversion to milk or the obsession with the Games of Thrones, our genes seem to be responsible for everything. So are we simply the sum of nucleotide bases tightly coiled in the tiny nuclei of our microscopic cells? Does everything come down to this? Does the sequencing of the human genome enable us to be sure of everything about ourselves and others? In contradiction to popular opinion, the answer is no. The quantum model of the atom counter intuitively shattered all beliefs held by classical physics, and put us in an juxtaposed position of relative surety and probability. It seems that genetics is currently at a similar stage.

Having mapped out the entire genome, scientists can be sure of only marked cases, such as the dominant gene that causes Huntington’s or the two recessive alleles that trigger cystic fibrosis. But most of the others are not as deterministic as they seem, as Mark Henderson, a journalist for The Guardian mentions. He says that ‘Genomics is much better understood as a complex and probabilistic science, in which a constellation of genetic variations makes the odds, but many other factors, environmental as well biological, decide the outcome.’

Scientists will constantly be challenged to revise their theories and methods as they continue to probe the genome. And as long as they are challenged, the outcomes of sequencing the genome will remain in check.

When I think of the potential effects of human genome sequencing, I think of my teacher who inherited Alzheimer’s and struggled with herself and her family as she lost her memory. To know that in the future not only could a person be prepared for the onset of a disease but may also be able to get rid of it, is gratifying. If by sequencing the human genome, we have the ability to change the lives of people and save them from the pain, the toil and the arbitrariness of the diseases, then why should we stop? The questions — the ethical ones, the cautious ones, the cynical ones — should all continue, but the journey of finding out should not stop.

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