Sunday, October 2, 2011

Guinea Pig

A dinosaur guinea pig (in honour of my little monkey who loves all things dino).











A few weeks ago I decided to take part in a medical research study.  To be a 'guinea pig'.  (apologies to all those who love these cute little creatures.  I am just taking advantage of a common way of describing this experience).

I have a few chronic medical 'things'.  Mostly I can forget about them due to advances in medicine, my own fortitude and luck.  When the information about the research study showed up in my work email it seemed to indicate an opportunity to give back and be part of future advances in medical research.  And I'm a sucker for ensuring that research groups are diverse (woman and brown - two points!).  I'm a one woman 'diversity plan'.

The research study is longitudinal (over a period of time), backed by a major medical facility and the investigators are long time medical scientists and practitioners.  It seemed like a 'good' thing to be involved with and hopefully some good would come out of it. 

There were lots of forms to read and sign.  There is an optional DNA research component where they would collect a DNA sample and use it to isolate which genes or sequences have a part to play in the disease they are studying.  I declined.  I don't want a drug company, no matter how peripherally involved, to have access to my DNA (at least not with my explicit consent).

The first appointment was relatively painless.  Two hours, weighing, measuring (I'm taller than I thought), lots of questions, a few tests and peeing in a cup:)  (one of the conditions is that you must not be pregnant while in the study).  The only part I could have lived without was the researcher attempting to draw blood (not a good idea!  I had two toonie size bruises to contend with the following week).  I don't mind giving blood but there is a big difference between those I can draw it and those who cannot.  I'll have to bring a special cookie for my next QUALIFIED human blood-letter.

The nicest surprise was that I would receive money for being part of the study!  Not a lot but still a nice bonus for a mostly unemployed student.  At each stage there would be a payment.  There are three groups in the study - people without the condition being studied, a group with the condition who agree to an uncomfortable procedure during the research and a group with the condition who do not have to undergo the uncomfortable procedure during the research.  Surprisingly the group who undergo the procedure filled up first!  I guess that $300 makes that procedure worthwhile!  I was happy to be in the other group.

It was the second appointment that had me rethinking my decision to be a guinea pig.  There were more questions and more tests.  One of the tests involved introducing into my body a chemical that aggravates the chronic condition.  The idea was to see how much of this drug it would take to aggravate me.  Apparently my body adjusts well to adverse stimuli but eventually I 'responded'.  The reaction was medically addressed and then we moved on.  There was another test where I could not do what was asked - they wanted sputum.  (Look it up, it is kind of yucky:)  I tried and did everything they asked but no sputum could I produce.  In a show of optimism, they sent me home with a specimen jar to see if I could collect it at home (no luck so far).

What had me rethinking was my body's reaction after the appointment.  I felt unwell and my chronic condition remained aggravated.  Three days I've been feeling under the weather.  Is it the chemical they introduced into my body?  Or was I already incubating a mild cold and the medical tests aggravated it?  Hard to be sure.  But I'm wondering whether it is worth the aggravation to be part of this study.  How much bad (in the short term) am I willing to endure for doing good (in the long term)?

Of course my questions about taking part in the research study mirror questions I've been having about life. 

I want to do as much good as possible during my time on this earth but at what cost to myself? 

And does doing good have to have some negative impact on me? 

Or am I just getting involved with the wrong good things (there is a mind-bender!).

My next appointment is in a few weeks.  I'm going to keep thinking about my involvement.  I've found that I'm prone to epiphanies when I allow my body and mind to ponder freely.

2 comments:

Janie Junebug said...

Very interesting questions. At least you have the option of signing up for the research and stopping if you like. People (prisoners, mental patients, etc.) used to be forced into these studies.

Love,
Lola

browngirl said...

Hey Lola,

Thank you for your note.

You are right about having the choice to stop. In some places in the world there are still medical 'guinea pigs' who have no choice at all and often no access the to the medicines they have helped develop.

Hugs