Message from a Patient: Whole Genome Sequencing Not Clinical Yet

“Message from a Patient: Whole Genome Sequencing Not Clinical Yet.” Interview with Jay and Joe Lake,  Mendelspod.com).

Jay Lake is a sci-fi writer and compulsive blogger. He is also a patient. Jay blogs often about his daily medical experiences and has built up a large following in addition to his sci-fi fan base. Jay recounts his experiences with medical bureaucracy, metastatic disease, the realities of being non-chemo-responsive, the limitations and hopes associated with whole genome sequencing for himself and others in the future, and concerns about family. What do Jay and his father Joe (also interviewed) think about the term patient? What message does he have for life science researchers? Jay comments:

  • “Am I a healthy guy who’s sick part of the time or a sick guy who’s healthy part of the time?”
  • “There is no purpose to cancer: it is an affliction.”
  • “If I can use my storytelling skills to explain cancer, then I’ve beaten the disease.
  • “Whole genome sequencing is an experimental technique, not a clinical one…with the goal of shaking out hotspots in his genome that might be associated with his specific cancer.”
  • “Only a few thousand people have had whole genome sequencing. It is a painful and expensive process. This wasn’t possible when I was diagnosed in 2008.”
  • “The cultural bind is the last hundred years of progress in medicine has been about narrowing things down (finding specific treatments for [a specific] disease). Whole genome sequencing turns that on its head.”
  • “The biggest payoff remains to be seen. The biggest frustration is the swimming in mud quality of going through all of the hoops you have to go through to do a clinical application of something that doesn’t exist in a clinical environment.”

Listen (6:05) The term patient implies waiting – and waiting kills

Listen (3:34) The medical bureaucracy very challenging for a patient

Listen (7:30) Health is a priviledge

Listen (10:46) Whole genome sequencing not clinical yet

Listen (2:13) Who is creating the future?

Listen to the full podcast » (31:46 min.)

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