DNA is Hot Business but is there Genetic Privacy?by Christine Buske | More from this Blogger 14 Aug 2006 11:50 AM A recent article in the New England Journal of Medicine discusses the future issue of "genetic privacy". As science progresses and the human genome has already been sequenced, we are facing an increasing possibility of treating genetic disorders or heritable diseases through gene therapy. The "who am I" question has plagued philosophers and common people for centuries, soon enough we will be able to know exactly who we are: summarized in approximately 24847 genes! There are growing possibilities of testing for specific "disease genes", based on which we can adjust our lifestyles. There are even possibilities of testing us for genetic predispositions for risk raking, overeating, aggression or even criminal behavior! With a growing number of possibilities for testing and sequencing our individual DNA, combined with the Internet and the fact that we continuously "shed" DNA wherever we go, we are also increasing the risk of genetic privacy. Who get's to "see" our DNA? And for what reasons? Do we really want an insurer to be able to see whether we have a predisposition for cancer? The article also discusses that privacy protection applied in medical care does not extend to your DNA. Currently DNA is being banked by law enforcement agencies, for identification purposes, and researchers looking for disease markers in our genetic make up. DNA is now becoming big business though, with private companies (such as Ardais Corporation and DNA Sciences) collecting DNA with the purpose of selling it to researchers. And, according to the article: "The National Institutes of Health also has plans to develop a national repository similar to the U.K. Biobank, a new resource for researchers that will eventually include information and blood samples from 500,000 volunteers." By making DNA collection and distribution a commercial enterprise, a middleman is being introduced between the donor and the researcher. The legal rights and obligations the researcher has to the donor then don't apply anymore. As with any new "sector" in health, business and science there are very little regulations in place. Most of them do not account for the new "DNA brokers", and are thus a little "fuzzy" when it comes to these new entities. In all fairness most states have started to develop more regulations and laws, but there is still a way to go! Relevanthealth tags User Comments No comments on this article yet. Be the first to comment! Discuss this article
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