Looking at how often other's post, I think I may be suffering from the blog equivalent of verbal diarrhea.  I suppose that part of this is that its a new thing, and i'm excited about it, and part of it is that I'm at ,home sick with a cold that won't go away - so I'm a little bored.  Boredom, like misery, loves company, so if I can bore someone else a little.....   Thinking of that, I believe that I may have stumbled upon a new scientific law: Conservation of Boredom.  Like the better known laws of Conservation of Energy and Conservation of Matter (both of which hold that the amount of energy and/or matter are constant -neither can be created or destroyed), the amount of boredom in the universe is fixed.  If I write something boring for you to read, and thus bore you, i have not created any boredom, just passed some of mine onto you.  Somehow it is a little comforting that I'm not actually creating any additional boredom in the universe here.

 OK, ethical lapse.  I promise that my whole blog will not forever be based on the movie 'Extraordinary Measures', but it's just so rare to have a movie with a more-or-less accurate depiction of scientists, that I've just found a lot of things to comment upon.  A main character, the scientist Robert Stonehill (Harrison Ford) at one point in the movie tells father John Crowley (Brendan Fraiser) something to the effect that in exchange for going into business together, Stonehill will save the Crowley children's life from the fatal Pompe disease.   I can't imagine that anything like this conversation happened in real life. It would be highly unethical to tell a parent of a sick kid such a thing.  (I don't think I'm spoiling anything here - that Dr. Stoneham sets out to find a treatment for Pompe, is basically the premise of the movie.)

I have had to opportunity to work on some diseases that affect children, and I've received funding from foundations dedicated to finding treatments for these diseases.  As part of that process, I've met parents of children who have the disease.  Of course, they would all love to hear that you can cure their children.  The reality is that an effective treatment is, at best, years away.  You can't lie about that.  You can be optimistic - you can tell them that progress is being made, and that their support makes that progress possible - but even then your optimism can be misleading, so you have to be careful.  Even if you think you are closing in on something that might work, and you think it might not be a long time, scientific investigation has a way of taking unexpected turns.  Unexpected turns are the norm, not the exception.  Sometimes, they are good turns, oftentimes they are not (good and bad being relative to progress toward a disease treatment - even 'bad' turns provide information and clues as to the right path to take.)  

It would be the easy thing to imply more than you can actually do, simply by expressing optimism.  They are in a fragile, desperate yet hopeful place.  They hear what they want to hear.  So you have to be really careful what you say.   It is not hard to come up with words that sound good, give false hope, and yet actually pin you down to nothing.  It is very hard to raise money for research - it's a good cause - it's not hard to rationalize that even if you mislead parents a little, you are doing it for the greater good.  It's easy to mislead without risk of having your words thrown back at you later. But it's not ethical to do so.  If doing the ethical thing was always easy, we wouldn't need ethics.

 Generally, the best you can say is that you can make progress, and that the parent's are doing a great thing, because in all likelyhood, what we find will not help their own children, but may help other's children in the future.

The one thing that you do owe foundations, parents, and any funding source for that matter - is to use their money wisely.  They are trusting you to not be stupid or unscrupulous.  They are giving you their hard-earned money because they believe in you.  It is absolutely possible to be a completely well-meaning scientist, but not up to the task of giving them what they need.  I no longer take money from a particular disease foundation because I've already done what I could for them.  I proposed something, they gave me money, and I delivered the progress I promised.  I'm proud of that.  I'm even more proud of the fact that, even though they were anxious to throw more money at me, I didn't take it because I didn't think that my particular scientific approach would be of further use to them.  The money would be better spent somewhere else.  That was hard, but I sleep at night.