From a recent N.Y. Times article on Vice President Joe Biden’s cancer “moonshoot”:
The researchers pointed out that although genome sequencing seems to be rapidly transforming cancer research, a tiny fraction of cancer patients are having their tumors sequenced because most insurers, including Medicare, will not pay for the procedure.
For a start, the group told Mr. Biden’s staff, Medicare could start paying for sequencing and, as a condition for paying, collect data on patient outcomes to see if they were noticeably better.
One question is who would have access to these data. Data on the genetics, treatment and outcomes of millions of Medicare cancer patient would be highly valuable to researchers. If patient identity could be made anonymous and the data secured, this proposal would not only help patients get access to genetic testing, but it would also create a treasure trove of data for researchers.