Friday, 6 February 2015

DNA Surveys and Privacy Ethics

A study of the DNA in New York's subway system has provided a huge amount of data on the presence of known bacterial pathogens and the potentially unknown organisms lurking on public transport systems. The collaborative study, which took 17 months, also analysed the human DNA to create a map of the melting-pot that is modern American heritage. But is it right to go nosing around in other people's DNA?

[caption id="attachment_265" align="alignright" width="210"]On electrophoresis: cDNA. cDNA run. Run DNA, run! DNA double helix - is yours for sharing? Image credit: ynse, CC2.0.[/caption]

The findings could identify that genetic samples from North Harlem's subway had African and Hispanic ancestry, while Brooklyn had a predominantly British, Finnish and Tuscan ancestry. But does this kind of genetic profiling, even when largely anonymous as in this study, breach ethical and privacy standards?

The authors state in their discussion:
Interestingly, such metagenomics profiling of a city, as shown here, could facilitate new forensic applications that use station-specific taxa and the distribution of ancestry-informative markers from shotgun genomic DNA, just as genetic markers informative of human ancestry can reveal the likely origin of a person’s birth (Novembre et al., 2008). For example, the bottom of a person’s shoe might represent the ‘‘genetic history’’ of that person’s daily or weekly travels, and the molecular data can reveal the proportion of unique genetic markers and potentially define the geospatial-genetic history of a person in a city, as well as his or her pathogen risk or threat. These applications of public genetic data create potentially ambiguous ethical situations, whereby one’s metagenome may hold clues about historical, geospatial-genetic history, which then reduce one’s expectation of privacy.

Privacy law is a complicated animal in any country. Typically, however, if something is in the public interest - i.e.: tracing criminal activity or disease outbreak - it may be deemed acceptable by a court. In order for a person in this instance to be offended by the publication, they would likely have to demonstrate that their specific DNA was sampled. This of course is quite difficult when there are thousands of samples, like a genetic needle in a haystack.

While this kind of study was innocuous, tracing heritage of human DNA at particular points in the subway system, who's to say it can't be used to look for genetic illnesses among people who live in certain areas? What impact would that have on the health insurance premiums of people living in those areas?

In 2008, the European Court of Human Rights in Strasbourg ruled that the keeping of a DNA database of those arrested but not convicted of crimes was illegal, however the keeping of DNA records of those found guilty was not. In contrast the US Supreme Court ruled against DNA privacy in Maryland vs King, 2013. The Court found that police collection of DNA is analogous to fingerprinting or photographing. In a 5-4 decision, dissident voters Justice Scalia, Ginsburg, Kagan, and Sotomayor, stated:
Make no mistake about it: . . . your DNA can be taken and entered into a national database if you are ever arrested, rightly or wrongly, and for whatever reason.

While these ruling pertain to police activity, for the most part, research is not covered. The area of DNA privacy will likely remain a murky one at best, but where scientists and researchers are concerned the best advice is this: Get legal consultancy, get permission where possible, and if you have to ask yourself "is it ethical?" then it probably isn't.

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