In an age when scientists slice, dice, and replicate the human genome for research purposes, is our DNA private property? As ever more countries—and even private companies—launch spacecraft into the universe, shouldn’t we have clear rules in place about appropriate space etiquette? And with more kids than ever mastering Guitar Hero instead of hitting the books, isn’t there something different we can try to get them excited about math and science? At the annual meeting of the American Association for the Advancement of Science this week, these were just a few of the topics explored by the scientists, engineers, educators, and policymakers in attendance. Here's a look at some of the conversations.
As genomic research becomes a more essential aspect of modern medicine, the need for clear policies on the handling of DNA is becoming increasingly pressing. Large biobanks are filling up with samples of DNA from millions of people around the world. This human data is disseminated to scientists at research labs hoping to create new drugs, better understand diseases, and learn more about how the human body works. But because DNA contains unique information about the person it comes from, it’s impossible to remove someone's identity from his or her donated sample. As a result, protecting privacy is difficult, and at present, there are few systems or policies in place to safeguard personal information.
Scientists discussed the issue of communicating these limitations to the public and worried over the inability of current medical consent forms to cover the use and re-use of DNA samples. At present, said Dr. Barbara Koenig, an anthropologist at the Mayo clinic whose team is close to releasing policy recommendations for the governance of biobanks, there are inconsistent positions as to whether or not the study of DNA is even considered human research. Additionally, consent forms signed by patients allowing the use of their DNA in research no longer apply once the genetic information is entered into a biobank. Researchers who access it later are free to do with it as they please. Finally, existing policies don't apply at all to commercial DNA-gathering enterprises such as mail-in personal genome organizations like 23andme.
"Consent isn't going to work because there's too much unpredictable research that goes on later," she says. "This is a fast-moving dynamic science with 30-year-old regulations."
Regardless, the scientists agreed that donations should be encouraged and that, despite the impossibility of "de-identification," the importance of DNA research to the future of human health should be emphasized to the public. "It's a moral imperative to share information," said Sharon Terry, President of the Genetic Alliance.
Ethics of Space Exploration
The Outer Space Treaty, created in 1967 to establish a framework for international space law, includes a section on the protection of the planet Earth from space-born dangers. At the time the document was drafted, humans had not yet traveled to the moon. Today, man-made satellites have traveled farther into the universe then could then have been imagined. But little has changed in terms of global policy to protect the planets we visit or the humans back home from conflicts that might erupt over who claims ownership of the destinations we reach.