Adding Your DNA To A Biobank Is A Noble Move -- But Is It A Wise One?

from the no-good-deed-goes-unpunished dept

One new approach to teasing apart the complex relationships between genes and common diseases such as cancer, heart disease, asthma and diabetes is by creating huge biobanks of medical data and samples. The idea is that by tracking the health and habits of very large populations across many years, and then examining their DNA, it will be possible to spot factors in common. Here's a major biobank that is shortly opening up its holdings for research:

UK Biobank recruited 500,000 people aged between 40-69 years in 2006-2010 from across the country to take part in this project. They have undergone measures, provided blood, urine and saliva samples for future analysis, detailed information about themselves and agreed to have their health followed. Over many years this will build into a powerful resource to help scientists discover why some people develop particular diseases and others do not.
Anything that brings us closer to understanding and treating diseases that affect hundreds of millions of people is obviously to be welcomed. But DNA is special: for a start, it is unique for each of us (even "identical" twins seem to have different DNA.) This has made DNA of particular interest to the police, since it appears to offer a perfect way for identifying those at a crime scene (not necessarily the perpetrators, of course.) Which raises the question: what happens when the police realize that biobanks offer a great way to get DNA they can't obtain in the usual ways?

The UK Biobank addresses this issue in its FAQ:

Will access be allowed for purposes other than health-related research?

The UK Biobank Resource has been established for health-related research that is in the public interest. Any attempts to use it for other purposes will be resisted. So, for example, insurance companies and employers will not be allowed to access the Resource to look at information, samples or test results for any identifiable participants. Nor will UK Biobank allow access by the police, security services or other law enforcement agencies, unless it is forced to do so by the courts.
Clearly the UK Biobank wants to do the right thing here, but that last phrase "unless it is forced to do so by the courts" means that the police will probably get what they want once they start invoking "terrorism" or asking us to think of the children.

And once they have a sample, they might well decide to sequence its DNA to help identify the likely hair, eye and skin color of the person concerned – and perhaps much else besides, as gene analysis techniques advance, including highly-sensitive areas such as mental and reproductive health.

Investing your DNA in a biobank might seem like a noble act today, but who knows what the payback will be in years to come?

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Filed Under: biobank, dna, privacy

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  1. identicon
    Anonymous Coward, 24 Jan 2012 @ 8:40am

    This may not be a popular post as hard truths are often hard to swallow.

    Looking at the world population growth, and the growth of the cost of medical care, two thoughts hit me. Why are we looking for more and more expensive ways to help people get older, and didn't Mother Nature design various illnesses to help control the population? Isn't a longer life expectancy truly silly in the face of the population explosion?

    More and more we hear about food shortages, and many cries of 'Oh Noes' we have to save the starving children! More and more we hear about the hight cost of health care causing major economic issues, yet we continue to make it more and more expensive, and often with the goal of longer life, instead of just shorter term amelioration of pain and suffering.

    I am not suggesting that health care should not work to ease pain and suffering, but what are the long term effects of health care working only to extend life expectancy? What are we going to do when the whole world is in food crisis mode, and only the rich can afford food? I do not pretend to have an answer. I do think that the potential harms from such research are hugely greater than any possible benefit.

    You can save your god arguments, your god may not be my god, and your god certainly isn't everybody's god, so just save your typing skills, Gods do not have a horse in this race (discussion).

    Then of course there is the inherent privacy issues mentioned above. Who will benefit from this reduced privacy? The government and corporations, that's who. Probably not the individuals participating because the development times for anything useful will likely be longer than the participants could hope for. Do it for the next generation? Reread the first four paragraphs of this post.

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