Bubble Boy Ethics, Corona, and Children
David was born in 1974 – to parents who knew that after his siblings died, he too would have no effective immune system. Doctors told the parents that future scientific advances would save him. He became “bubble boy.”
The stress and differences of opinion between the parents actually caused their divorce. In comparison with the rest of the story, that was nothing.
The boy didn’t know trees were in three dimensions and … found all sorts of ways of acting out. Feces on the bubble wall is one of the more graphic ones – a symptom that he was an emotional train wreck. For details, see the excellent 1997 article in the Houston Press: https://www.houstonpress.com/news/bursting-the-bubble-6573830
Dr. Ralph Feigin took over his care, saying the situation was intolerable. They must try a treatment which probably would leave the boy with cancer. At 12 years old the current situation, Dr. Feigin argued, couldn’t ethically go on. The family refused.
(Side note: No known relation – this Dr. Feigin was head of the children’s hospital in Houston … I found him and the story by accident based on the name. Even more strange – his son shares my first name as well and an early client of mine, searching for his patents, hired me as a patent attorney thinking it was no coincidence.)
We’re still in the middle of today’s story, as I write this in 2020, a year which will go down in history. We don’t yet know the outcome – the World Health Organization and other medical authorities seem to think the current pandemic will follow the path of one from 100 years ago … and be over in 2 years.
Who says? (Get it… ha…)
As one needs to do with the scientific method – isolate your variable. Let’s assume for a second that everything about the 1918 and 1920 pandemics are otherwise equal except for the protocols which keep the spread rate lower. That would mean that what lasted 2 years will now last … I don’t know … 5, 10, or 12 years maybe? Do we now assume science will fix the problem within those 2 years making societal shutdowns of various degrees worth it?
It’s the same question – how long should David Vetter, “bubble boy” have been kept going in hopes of a medical cure that was never to be? Do we keep our children in isolation for 12 years? What if the virus is still killing people … and what if for short term gain, it stayed around, mutated, prevented herd immunity, and made things worse in the long term?
What if putting completely faith in science doesn’t conquer all? (Titanic anyone?) (To be fair – putting complete faith in a higher power conquering all is probably not a great idea either. There’s a medium somewhere in the middle.)
It’s a terrible ethical dilemma… at one point to you say, “the cure is worse than the disease” and “kids must go back to school.” After how many years do we say the cure, living in isolation without proper emotional growth and education, is worse than the disease? How long do we keep kids out of school? Do you wait, if it comes to that, a bubble boy 12 years – and tell your 18 year old leaving the fallout shelter for the first time since she was 6, “go into the world – be social, be well adjusted now…”
David Vetter was one child. Now society is gambling with millions of children – the future.
In New Jersey very few public schools are fully opening in 2020. Many aren’t opening at all for a second school year! These schools are often forced to stay closed by unionized teachers who get paid whether they work or not. (By contrast, private schools are more than full where without tuition dollars from parents whose children are in school, there is no school.)
At some point schools will have to open back up again. Will it be at the David Vetter 12? Whatever your faith is in – science, G_d, or both – it won’t come to that. The ethical dilemma is worth thinking about seriously.
Maybe science is mass producing an effective vaccine within a timeline that actually does more good than harm. Maybe it isn’t.
(Postscript: David’s stem cells did help save others born later with the same disease though it couldn’t help him.)