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Genomics promises huge societal benefits. Personalization of medicine would allow doctors to tailor therapies for each individual patient. During medical check-ups in the near future, a nurse might provide your doctor with your DNA sequence, along with your blood pressure and temperature, as another tool for diagnosis.
However, a great deal of genomic research must be done before personalized medicine becomes a reality. With this incredible new technology comes the need for a clear ethical framework for research. The current haphazard system, created on the fly alongside advancing genomic technology, fails to sufficiently help research participants understand what they might be getting themselves into – and to what hazards they may be exposing themselves.
The participants unmasked in the 1000 Genomes Project signed an informed consent form that notes uncertain privacy, given the unpredictable nature of technological advancement. However, the danger of identification is underplayed. The form stated that identification should be possible “only if somebody knew that you had given a sample to be studied for this project.” This is the standard language of the field. Indeed, this consent form is one of several provided by the National Human Genome Research Institute as templates for researchers. All of these templates frame the possibility of being identified as highly unlikely.
The Erlich study shows otherwise. And this means that the standard bar for informed consent is no longer sufficient. To understand why, we need to look at how the ease of genome sequencing has changed in the past decade and a half.