Creating huge national databases of people’s DNA is an increasingly contentious topic since the US Supreme Court recently backed the routine swabbing of DNA from all criminal suspects once they are arrested – at the immediate stages of investigation and before any legal proceedings.
The Fourth Amendment requires the US government to balance legitimate law enforcement interests with the privacy rights of individuals. When it comes to genetic fingerprinting, people worry about how safely guarded their DNA data is, as well as about the reliability of the information.
Similar concerns are hotly debated in the medical world. The sharing of large amounts of DNA data can enable researchers to predict and treat serious disease. But would you want an insurer to gain access to your genetic blueprint of personal disease risk?
A new example of where there may be clear medical benefits to widespread sampling of DNA is seen in research against Alzheimer’s disease.
Today (July 12th), the international conference for the UK’s Alzheimer’s Association, held in Yorkshire, England, heard researchers claim they had gained whole genome sequences for the “largest cohort of individuals” ever grouped together for a single disease – more than 800 people.
Enrolled in the Alzheimer’s Disease Neuroimaging Initiative (resource no longer available at www.adni-info.org) (ADNI), the genetic information from these people could be crucial for the understanding and treatment of this common type of dementia.
But how safe is it to give up all your genetic information to medical research? Well, in medical research studies, highly regulated ethical protocols are in place that aim to prevent such things as abuse of private and confidential data.
For the Alzheimer’s research project, anyone interested in enrolling in the study had to give their informed consent, and the study doctors and scientists had to abide by numerous protocols (resource no longer available at www.adni-info.org) set out in advance. Any parties interested in gaining access to the resulting DNA database must also agree to a number of principles, including not asking any researcher to somehow try and track down individual DNA data.
So, in medical research, information from individual people’s DNA should be safely anonymized so that analysis is on a “big data” level and cannot be drilled down to identifiable individuals.
This is not always the case, though. A paper published in the journal Science by Yaniv Erlich, who runs a lab at MIT’s Whitehead Institute for Biomedical Research, shows how he
So how much trust do people place in police and other public authorities to safeguard the data on your genes? The Economist recently ran an online poll and found a roughly 60/40 split – the majority of people said yes to the question, “Is it ever right for the DNA of the innocent to be used for any purpose without the consent of the ‘owner.'” The debate, “The ethics of DNA databasing”, centered on a motion that “This house believes that people’s DNA sequences are their business, and nobody else’s”.
While it seems a majority of people are not too worried about national DNA databases, a large minority are seriously concerned.