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Tuesday, May 28, 2013

The ethics of DNA databases

Update 6/2013: The U.S. Supreme Court just ruled that DNA samples can be taken from people who are arrested but not yet convicted.
Do you think the government should have your DNA or that of your loved ones on file? What if the information could help identify missing persons or human remains? And who should have access to the data? Considering that 100 million people will probably be part of a DNA database by the year 2015, these are not trivial questions.

Currently, there are many circumstances in which a person’s DNA might find itself in a government database. Many countries routinely collect DNA from all military personnel. Petitioning refugees and immigrants might have their DNA compared to their alleged family sponsors. And of course, the DNA of criminals and victims is often collected.

There are also programs with databases set up to combat specific problems, like human trafficking. DNA-PROKIDS collects DNA in an effort to thwart the illegal transport and adoption of children out of their native countries.

For most people, providing DNA samples is strictly voluntary. It’s also important to note that at this time, DNA profiling is used only for the identification of individuals. Police and government departments cannot delve into our genomes for health or personal information. However, policies change and technology improves. Joyce Kim and Sara Katsanis from Duke University Medical Center suggest we get on the ball and figure out how we want to regulate DNA collection before it’s too late.

A few of their questions: 

  • Should the DNA databases be held privately or publicly? 
  • Who should have access to the data and under what circumstances?
  • What kind of information should agencies be allowed to glean from the data? In the not too distant future, it will be a simple matter to find out a person’s genetic risk for health or cognitive problems. We probably won’t want everyone to have that information.
  • What provisions are there for either opting out or expunging one’s DNA from the records?

What do you guys think?

For more on this story, read Virginia Hughes' fascinating article at Only Human.

Joyce Kim, & Sara H. Katsanis (2013). Brave New World of human-rights DNA collection Trends in Genetics.

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