In addition to seeing patients, taking care of all the administrative red tape that comes along with being the head of the therapeutic radiology department in Singapore’s National Cancer Center, and acting as a full-time storytelling grandfather, my dad is also the chairman of the Institutional Review Board at the NCC (between him and Jenn, I have no lack of overachieving role models ;-)). That last position means he spends huge amounts of time reading voluminous reports on proposed medical research trials and deciding whether the purposes and practices of any given study on a new means of treating cancer in humans falls within the boundaries of certain ethical guidelines. If you’re interested, you can read an article about that part of his job here.

Coincidentally, when Molly was with us the other day the three of us had drinks with a friend of hers who serves on a similar sort of board for a major research hospital in Boston. We talked about his perspective on medical research trials over Dark and Stormys and a rather fancy cheese plate, and it transpires that while he quite naturally thinks that this kind of research is indispensable, he generally dissuades friends and family from signing up to be subjects in studies because — he says — he’s seen a lot of healthy people experience rather unpleasant side effects, potentially long-term ones as well as temporary discomforts. He also thinks that the safeguards in place to protect research volunteers — the kind of ethics board evaluations that both he and my dad participate in, for instance — aren’t powerful enough, at least in the limited experience he’s had (we wondered whether perhaps the guidelines for human studies were more stringent in Singapore). One of his arguments was that informed consent is a good goal but a difficult one to achieve when you can’t be entirely sure of the effects the treatment will have. Ultimately, he believes, if you don’t have a personal investment in the particular disease in question, there’s no reason to play with fire.

I’m still trying to figure out how I feel about that perspective, because one of the unfortunate results of compensating people for their participation in medical trials (the more they offer, Molly’s friend grimaced, the wider a berth you should give a study), at least in this country, is naturally that people will volunteer for no other reason than that they could really use the money. That means in many cases medical trials tend to be filled by those parts of the population with the fewest resources and the weakest support systems, as well as those who are the least likely to have done a lot of research into potential side-effects. In other words, people who might be signing up because they don’t have a lot of other options. Which kind of makes the system seem a little broken to me — in a way, it can’t help but make use of the most vulnerable segments of society as a testing ground for everyone else. On the other hand, I think compensating study volunteers is in general a very good thing. I’m curious now about the differences, if any, between the ethics board process as the NCC applies it and as it is applied at this Boston hospital. It’s entirely possible that because the board my dad is on only has to evaluate cancer treatment trials, it’s easier for them to create and make use of stricter, more specific rules.

So at the end of all this I’m still trying to decide whether or not to volunteer for a HIV vaccine trial, which is something I’ve been thinking about for over a year now. Because these studies are long-term ones, requiring about a 12 month commitment for each subject, I couldn’t sign up now for a Boston-based trial. But it remains on my mind.