My husband, Rowan’s father, is faculty within the University of San Diego’s Department of Medicine.

What does that mean in my world?

That means:

  • My husband comes home at night to tell me that the man who recruited him has walked into his office and says the hospital has a “moral imperative” to apologize for Rowan’s death.  But then this same man walks back into the office next door, and refuses to speak publicly.
  • My husband comes home at night to tell me that the man who does his review has said “I’m sorry that your son was killed”, and has sat and told my husband of the little girl with Down’s Syndrome who had appendicitis.  Her discriminatory doctors sat back (knowing that she had appendicitis) and allowed her to become septic, and a month’s stay in the ICU was necessary to save her life.  But this same man walks out of the review, and refuses to speak publicly.
  • When I bring Girl Scout cookies to my husband’s office or stop by for lunch, only the lab tech and the receptionist will look me in the eye, much less mention my son or his death.
  • A physician that drives directly from my husband’s office to Rady Children’s Hospital, regularly, has never mentioned my son’s name, and has actively avoided discussion of his death.
  • When my husband and I widely spread thorough research on special needs discrimination in healthcare NO SCIENTIST OR MD within his building even acknowledges that we are discussing it.

Why does this “See No Evil, Hear No Evil, Speak No Evil” approach among scientists matter?  Why does it matter whether the MDs/scientists DOING the research give a shit about the MDs/doctors USING the research?

Because of this:

Because today, my husband’s colleague walked into my husband’s office with plans to use this new genome-editing technique that  alters DNA in a way that can be inherited – in MICE.  (For those unfamiliar with science, it goes something like this: fruit fly, then mouse, then a few more steps and a few more regulations, then humans.  That is not an attempt to be scary, that is just a simplification of how it works).

He wasn’t planning to do this research next year, or next month, but today.

This scientist had NOT, as of today:

  • Been aware of the ethical debate associated with this research (much of which took place among researchers prior to this letter or this science being published, and is significantly downplayed or not mentioned in this article)
  • Been aware of the article posted above (which is so widespread that I first saw it on Facebook)
  • Given any thought to the future use of this research
  • Given any thought to the potential future use of the research in any kind of discriminatory fashion
  • Given any ethical thought, or considered any adverse consequences, to what he was about to create
  • Given any thought to addressing current discriminatory practices in medicine

And there is absolutely nothing in place to require him to do any of these things before walking in his lab and doing this research.  (Nothing, aside from the hour-long lecture my husband gave him yesterday).

People wonder why I’m still angry?  Aside from the obvious?  Because I live this insanity everyday.  The insanity of everyone saying “oh, well” while continuing to provide the potential means to make the discriminatory practices in healthcare worse.

I remember that ethics class that I took as an undergraduate.  You know the one where you talk about thinking of the consequences of your actions before doing them.  Or was that kindergarten?

Has the responsibility to give ethical thought to your actions been lost in science and medicine?  My experience over the past year says yes, though my fingers are crossed that my experience does not define medical science as a whole.  Because I hope that no other mother has to wake up every morning to the ultimate consequence of the reality of what progress without ethics can do.

I’m not claiming to be unaware of the potential value of this research, but shouldn’t we be addressing this first?  To learn more about Special Needs Discrimination in Healthcare, please visit here.