Do Unique People Have An Obligation To Be Studied?

I saw a documentary on Conjoined Twins.

The first set Lori and George (Dori/Reba) Schappell were featured and they were shown to have no oppositon to being studied. They allowed doctors to make detailed images of the brain (they share one) and other tests.

On the flip side Abby and Brittany refused to have any tests performed on them beyond what is absoluely medically needed. Their mother also had this attitude since their birth.

I got to thinking just what are the obligations of people with a unique medical condition to allow themselves to be tested for the good of society.

I got to thinking what if a guy has HIV and doesn’t take meds and never gets sick. There is such a guy (he’s had it since before 1980) and has never taken any meds and is healthy. But he allows tests to be peformed on him

Abby and Brittany are fascinating to me because the way their body is able to work. No one can explain how two brains (each twin controls half the body) can co-ordinate so well. (this is due to lack of test)

I was thinking about all the good testing could do for stroke victims or other brain injuries if we could figure out better how the brain works.

Now I’d like to say, I totally understand, legally there is NO obligation to get tested. Nor would I agree that there should be a law as such.

I also understand why people would not want to be tested. Everyone wants to, and is entitled to, live a normal average life.

But I also understand the flip side, if you have a unique condition, whether it’s medical or the ability to paint or sing or whatever, I think if you don’t use those gifts or allow your uniqueness to be studied, society as a whole loses.

And I think that in addition to ourselves we have a obligation to our society to better it, not just live or exist in it.

So what do you all think.

Again I want to rule out a legal obligation, because I never would agree to forcing anyone to have tests or to be studied against their will.

I’m talking about a moral or ethical or societal obligation (such as we have a societal oblication to drive to the "rules of the road’ to prevent choas on the streets)

I would also think that anyone studied, should have the right to decide the course of that study.

I don’t believe people have an obligation to have their privacy invaded. And I don’t believe anyone has the right to decide this, other than the people involved. It’s entirely up to them, and I’d be very reluctant to burden them with “moral or ethical or societal obligation” issues.

Well, I’d see a difference between people who are merely medically fascinating, and people with a medical condition (like the healthy HIV guy) who, if studied, could provide real and potentially immediate benefits to medicine and humanity at large. The latter I’d see as an obligation on the part of the unique person, while the former is really more of a mitzvah.

The problem would cease to exist if whoever wanted to research these people made it worth their while. Pay lots of money, whatever.

Hell to the no. If they volunteer, good on them, but they certainly don’t owe it to anyone.

:rolleyes: Right, because money solve everything…

I’m not sure why people have trouble understanding that some folks don’t want to be subject to study. The Hensel twins and their family, for example, have always striven for as normal a life as possible for the two girls that, in the past, would have been limited to a career in a freak show. The reluctance to be an object of study (as opposed to two young women) is part of that.

If someone is firmly opposed to being treated as no more than a laboratory specimen I’m not sure what is going to make it all “worth their while”.

I don’t think they have an obligation to be studied.

…even more money?