Although very informative, the article fails to highlight a catch-22 currently encumbering genomics innovation. As long as the relatively unregulated nascent personal genomics industry continues to pump out complex and often conflicting probabilistic results, there remains a real fear that this genetic information could unfairly and negatively impact us more so than the standard medical histories that are an accepted factor in the insuring process. Conversely, the industry needs to continue to pump out this data so that we can learn to better analyze it and extract real actionable recommendations. A solution is non-trivial, but should necessarily involve both regulatory change as well as evolving societal mores wherein social stigma associated with genetically ascribable disease are lessened. Technology can play a supporting role in working to better lock-down this data, at least until we are better equipped to handle it.
Dov Greenbaum JD PhD & Mark Gerstein PhD
Unpublished letter in response to:
Kira Peikoff's " Fearing Punishment for Bad Genes" April 8, 2014, NY Times