Over the last decade, the price of genome sequencing has plummeted, leading to the rise of direct-to-consumer personal genomic testing (DTC PGT). The greater accessibility to this genetic information has led to increasing concerns about the validity of this data, the economic burden it could place on the medical and insurance industries and the psychological impact it could have on those unfamiliar with this new information.
Additionally, as PGT becomes more prevalent, so too will the vast quantity of valuable data that these services generate. This has created fears around privacy and the use of personal genomic data in academic research, insurance premium calculations and their effect on existing legislation. All these concerns have led to a rise in calls to increase the regulation that governs the industry.
While there are many valid concerns with DTC PGT, particularly with respect to the quality and efficacy of the information these commoditised services offer, there are also real fears that over-regulation could stifle innovation and prevent consumers access to their own personal genetic data. This paper aims to show that despite the trepidation with DTC PGT, tighter regulation that limits individuals’ access to the information is not the answer. Instead, legislation should focus on the quality, reporting and oversight of the information presented to the consumer, as well as addressing privacy concerns. Continue reading “This is How I’m Going to Die: Consumer Genetics and Our Access to Knowledge”
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