[FoRK] parents / kids / privacy / decisions / obligations / etc.

Jeff Bone jbone at place.org
Fri Feb 5 11:42:57 PST 2010


Ken writes, re:  genetic testing / parental decision-making a priori  
childrens' ability to consent:

> (a) How much did you factor/weight the fact that you are making this  
> decision primarily on behalf of your childrens' future, not your  
> own? (b) This is kind of like the tyranny of today's parents...  (c)  
> We are creating a reality for them that we cannot know and over  
> which they have, and will have, little or no control... (d) The  
> saddest part is that it is mostly self-centred and thoughtless on  
> the part of the parents. (e) Not accusing you of any such behaviour

No need to apologize at all, these are all entirely legitimate  
considerations / questions / concerns.  Let me address these from my  
personal perspective.  I can't speak for any other parent making any  
such decision.  For me, this was a really big deal.

Anybody who knows me at all well or has for any length of time will  
quickly come to realize that my future discount rate approaches zero  
on average, and is sometimes (often?) negative. ;-)  Generally  
speaking, the major preoccupation of my entire life is and always has  
been thinking about the future.  I've never been one of those "live in  
the moment" kinds of folks;  I find it absolutely impossible and  
frankly don't usually understand such folks or get along well with  
them.  And despite all appearances of the centrality and potentially  
exclusivity of self-interest in my little world --- and yeah, sure,  
guilty as charged on at least the former count ;-)  --- I also  
understand and value extrapolated self-interest, i.e., life isn't a  
zero-sum game and generally speaking it's good to look out for  
opportunities for shared interest and, whenever possible, keep other  
folks' interests in mind.

I was obsessively concerned with making the right call *for the  
kiddos* and for *the future they might occupy* (and their co- 
occupants).  Had to make such decisions in the presence of irreducible  
uncertainty, *on their behalf*, absent their ability to make informed  
consent but in a situation requiring a decision *now.*  Couldn't have  
acted in good conscience unless I was convinced that, given my best  
understanding and extrapolation, future benefits *to them* probably  
outweighed future risks *to them.*  Would've been easier to say no w/o  
further thought, but that would have been a cop-out, though  
(obviously, as Russell indicated) that was probably what most folks  
who know me would have *thought* I'd do, given what they might know  
about my biases.  "Ran the numbers" as rigorously as I could.  In the  
end, I judged the opportunity cost to the kids (not to mention anyone  
else the data might benefit w/o costing the kiddos anything) to be, as  
calculated, simply too high.  Your estimates (and hence your  
solutions) might vary.

Did the best I could (along with the wife, running her own decision  
process in parallel;  answers converged, confidence increased.)

So...

(a)  Completely.  Arguably obsessively.

(b)  I don't disagree, but unfortunately decisions had to be made at a  
point prior to their ability to make informed consent.  I view  
parental obligation in this regard as ethically equivalent to e.g.  
fiduciary obligation.  Made the best decision I could make on their  
behalf in good conscience.

(c)  That's just a truism.  No different from any other point in human  
history.

(d)  Maybe.  I'm comfortable that it was not in our case, can't speak  
to and have no desire to judge anyone else's.

(e)  Shrug, accuse if you like, I won't be offended (more accurately,  
I won't much care. ;-)


jb



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