After a decade of work and at an expense of nearly $3 billion, the sequencing of the human genome was completed in 2003. Advances since then have made individual sequencing much more widely available — an individual’s genome can now be sequenced in months, for a few thousand dollars.
But knowing what to do with this knowledge has not kept pace with the gusher of genetic data. What will individuals do with this flood of information? And is some of it information they might prefer not to know?
Two CHOP researchers, the husband and wife team of Ian D. Krantz, MD, and Nancy B. Spinner, PhD, work to make sense of how to best share, interpret, and use genetic information. With the support of a four-year, $2.2 million award from the National Human Genome Institute, they are currently examining the ethical issues associated with the knowledge gene sequencing brings.
Drs. Krantz and Spinner’s research is highlighted in the new, Dec. 24 edition of Time magazine. The magazine’s cover article, “The DNA Dilemma,” examines how both doctors and families are struggling to understand — and use — the increasing wealth of DNA data. The investigators’ work was also featured in a series of videos shot by Time, one of which you can watch below.
“By the end of this decade, we anticipate that genomic sequencing will be readily available for the diagnosis of pediatric disorders,” Dr. Krantz said. “Our goal is to help make the information-sharing process systematic, thoughtful, and sensitive to the needs and desires of patients and families.”
To see Time author Bonnie Rochman’s blog posting about this article, and to watch another video about Drs. Krantz and Spinner’s work with one CHOP family, click here.
To read “Kids and DNA,” a five-part series by Rochman that appeared in October on the Time.com website, click here.