To Test, Or Not To Test: A Regulatory Question

My internship with BioTechniques dumped me headfirst into the world of genome sequencing. One of the hottest (and by that I mean most talked about, funded, and hyped up) biotechnology fields, genome sequencing has a lot of power. The media loves genome sequencing because it attracts a lot of public interest, so its no wonder the technology is a headline maker.

For those who are unfamiliar with the term, genome sequencing is a process by which a machine takes a sample of your DNA (from saliva or blood) and “reads” it by identifying the nucleotide bases (Adenine, Guanine, Cytosine, or Thymine) that make up your personal DNA sequence. By comparing this sequence to the human draft sequence (a previously “read” and studied human DNA strand) researchers can tell if anything in your DNA sequence is out of place, indicating a chance for genetic disease.

I tried looking into personal genome sequencing companies for an article for my J800 class last semester. While I did come up with an article eventually, I decided not to pitch it on the grounds that none of the personal genome sequencing companies would make a representative available to talk to me, therefore my article was slightly off kilter. Apparently, no one wants to bother with helping a student, and if you don’t have a definite place to publish you just aren’t important enough for the corporate world to give a damn.

But, I still find personal genomics incredibly interesting, which is why the New York Times article Heavy Doses of DNA Data, With Few Side Effects caught my eye. The article takes a look at research from the Scripps Translational Science Institute that shows that people who pay money to have their genome analyzed often did nothing with the data, and even when the results indicated a higher risk for disease people didn’t feel any extra anxiety.

The results are interesting because they go against what you would think the common reaction to obtaining your genetic data would be. There has been controversy about public access to genetic information on the grounds that people won’t understand it and will thus act rashly or misunderstand their results. The new research shows that most people either didn’t do anything with the information they obtained, or consulted a medical professional before acting.

The new research doesn’t close the door on the issues surrounding personal genomics by any means. The idea that the technology and service should be regulated, and by who, and how strictly are all still prominent concerns. However, the study could serve to help policy makers decide how to regulate the industry.