Lots of headlines today like this one: Indiana storing blood & DNA of 2 million children without parents consent. The media coverage is making it seem as if this is unusual. Its not. Storing samples from newborns for possible research without consent has been standard nationwide since the late 60s, when states started mandating newborns screening for genetic diseases. Whats unusual is that a few states have finally started looking at the consent history of their samples and questioning what to do with them if they werent given with consent (heres a survey of those state-by-state consent practices, for those interested bit.ly/1nc56qE). Numerous ethicists and experts in this area have been saying for years that we need to address this on a federal level to prevent haphazard state-by-state legislation/case law that could easily go too far in any direction (either not protecting individuals, or harming the progress of science). So far, in recent years, millions of these samples have been destroyed in Minnesota and Texas when similar news broke, without attempting to get consent for their use (which studies show most people will give, if asked, but that they object to the research without consent). There are a lot of concerns about this trend of destroying samples continuing state-by-state. Eric Meslin, director of Indiana University School of Medicines Center for Bioethics has said in the media coverage of this Indiana news: I think its very legitimate for people to be concerned and wonder What happened? ... In a situation like this, you need to ask permission At the same time, he says, We have the ability to learn more and more from little bits of blood and biopsy material. If we throw all that away, it means any scientific value is lost — lost forever. Thats not in the public interest. The problem is, so far, states havent figured out how to deal with these stored samples in a way that addresses both sites of that equation.
Posted on: Wed, 16 Jul 2014 22:32:29 +0000
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