Ethical treatment of whole genome research participants

Seen on Huliq.com:

Recent technological developments have made it possible for scientists to sequence an entire human genome, but these advances may be a mixed blessing. While much has been made of the benefits of whole-genome sequencing, from improved disease diagnosis to rational drug design, the impacts on the privacy and autonomy of individual participants has received much less scrutiny.

In a new essay published in the open-access journal PLoS Biology, Timothy Caulfield and his colleagues argue that the ability to sequence a person’s entire genome has created a whole new set of moral challenges that standard research ethics guidelines were not designed to solve.

Several aspects of whole-genome sequencing challenge existing research ethics norms. Some of the most pressing ethical issues arising from whole genome research include the vast amount of data produced, the uncertainly regarding future research uses of the data, implications of the data for family members, and the technological ability (and expectations) to publicly release the data. To date, very little effort has been put into providing new ethical standards to address these unique challenges.

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