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Should we fear DNA testing?

 

DNA sequencing is here to stay. The implications for global health are mind-blowing, yet many worry about privacy concern

 

Imagine you had a tumor. Surgery removed most of it, then chemotherapy or radiation took care of the cells that lingered. You went through a harsh period where you felt exhausted and ill, but then you were OK. Cancer free. Until one of your tests showed some new shadows in a different part of your body. Your cancer was back and on the move.

But then your doctors told you that by sequencing the genome of your tumor and looking at it in the context of your overall DNA, they realized you could take a drug that would essentially block cancer's progress in your body. Would you take the drug? Would you be happy that your DNA had been sequenced?

Now imagine you've just had a baby. State or national law mandates that your baby's blood is drawn after birth and his or her genome is sequenced. A database houses the information anonymously, but the details of your child's gene structure are shared with research facilities and drugs companies. How would you feel about that?

Both of these hypothetical situations already happen. As we clamor about the loss of our privacy in the age of the internet and NSA eavesdropping, it's worth considering another aspect of public record keeping. Whose medical privacy is worth losing for your improved health or for the improved health of society?

Every baby born in the United States is currently screened for disease at birth. The range of testing varies from state to state and you can check the variety here.

Doctor Robert Darnell of the New York Genome Center wants to replace what he feels is an inefficient testing system in New York State with genomic sequencing performed on each newborn. He's not alone. Pilot schemes across the US have begun to screen newborns as doctors investigate the benefits of using genomic information as a healthcare resource throughout a child's early years.

At the same time researchers are trying to figure out how to protect and/or share that information. What are the rights of a child not to know his genetic heritage?

Meanwhile in the United Kingdom, the NHS hopes to have sequenced the genomes of 100,000 people by 2017 with the eventual aim of having everyone's DNA in their database.

With most of our medical records already online how much should we care about losing this level of privacy? Should you be scared that employers would be able to find out from your genome structure that you carry the Huntington's disease gene and fire you? Can your genetic predilection for Alzheimers or breast cancer be held against you?

In a perfect world, the answer to these questions would be no. And, in fact, Americans – dependent on insurance in a country where the cost of care is sky high – are more at risk than Brits to abuse. Which makes it unsurprising that most of the worst case scenarios put forward by privacy experts revolve around insurance companies denying coverage.

But to focus solely on the privacy concerns of individual genome sequencing is to miss the point. DNA sequencing is here to stay. For the first time ever, we are looking at the chance to cure major diseases, possibly before they take hold. The implications for global health are mind-blowing. What if your baby girl could avoid developing the diabetes that has run through your family for generations? If Schizophrenia could be halted in its tracks?

We are living on the edge of a brave new world where the possibility of living without the health problems that have plagued us for generations is within sight. It says something about human nature that we can't imagine this happening without sabotage.

 

http://www.theguardian.com/commentisfree/2013/nov/03/dna-testing-privacy-concers-benefits