And it was my fault. Plus it was usually fun.
I kind of explain our experience in the latest podcast, but I may have rambled a bit and been a bit sleep deprived as I watched the darkness turn into light. I am actually afraid to listen to myself.
I live near a large research university, included in the paperwork at the hospital when my children were born was a postcard to enter them into a human subject database. So I filled it out and sent it in. A few months later I got a letter asking if I would like to have my firstborn in a study on speech development in babies and toddlers, so I said “Yes!
After saying yes, I was sent many forms which I filled out, and a long form with words and circles to fill in. Since he was still a baby I promptly filled in the circles for “never” for all the words, and sent it in. Then I was sent a $5 bill. I did this every couple of months for a while, and it was getting quite noticeable that I was just filling in the “never” circles. During one of his many trips to the hospital, I missed sending in the form by a deadline. He was dropped from the study, but we were alerted to the fact that something was not quite right (as an infant he had seizures, had his last major seizures with an illness as a toddler, plus many bouts with croup… he has a severe speech disorder and presently gets disability services at the community college).
But he was not dropped from the database. Not long after we got another postcard asking if he could be used as a subject for a method to check vision. So I said “Yes!” again. Though this time I had to show up at a specific place at the university’s medical center, a series of buildings that kind of make up one building which resembles a maze often associated with mice.
So with directions in hand and a temporary parking pass I dragged in my two year old (Big Boy), and my brand new two week old son (MathMan) to be studied. I find the room, and then I fill out lots of paperwork. There was lots of paperwork for a child who only has to look at a board of black and white horizontal stripes on a board. But the researchers are wonderful and obviously enjoyed being around small children. Seeing that I had a two week old newborn they ask if they could try their vision test on him, and yes… he actually notices the stripes (his entry into the database was still in the works, so they were delighted to get a “fresh” newborn). I was told that my two year old was a little farsighted (and he still is farsighted, he has worn glasses since he was four years old).
When the two week old baby (MathMan) was about three or four years old I received a postcard for him to be a “normal” child in an evaluation of test for autism. Again I said “Yes!” I was sent a temporary parking pass, and off I went with him to this trial. When I arrived I was given a set of paper to sign, and the very familiar list of words he spoke (I still filled in many “never” circles, but it turned out he was a bit late talking, so it was okay) and he was enrolled. First they had him play in a room with a student evaluator, which he was happy to do. Then they had him sit at a table with the evaluator while she did some simple tests, which were a prelude to the real test. She pretended to cut her finger just to see his reaction. A reaction that caused many “Ahhh… how sweet” reactions from the grad students behind the two-way mirror due to his shocked face of concern (it was a test of empathy).
When that boy, MathMan, was in sixth grade he brought home paperwork asking if he could be included in a long term study on the mental health of children in middle school… and I agreed. So I sent in the forms, and he was one of those who was chosen (they randomly selected about 25% of those who agreed from each school). This involved long interviews with both parent and subject (the child), separately. I, as the parent who was also interviewed, got a check for my efforts. MathMan got cash.
And now he gets a check. This study got more funding, and he was interviewed while in high school, and as a college student was asked to submit a DNA sample (more here, and yes I know the page needs to be updated!). MathMan has been a human subject from the age of two weeks to almost twenty years old.
Due to the variations of random selection, my daughter, the Linguist, has only been called in once, and that was to see how long a toddler remembers a toy existed. It was fun and interesting, and talking to the researcher is always enlightening.
Now for the nitty gritty… a series of questions and possible answers:
1) Oh wow… this looks fun! How do I sign my kid up!
It helps to live near a large university. They always need little research subjects, hence the paperwork at the hospital along with the social security registration and birth certificate details. Other places I have seen requests were the newsletter for customers of the diaper service, the local “Child” paper often found at kid clothing/toy stores and notices posted at places parents go to, even coffee shops (which seem to be on every corner), and requests through the schools. Plus notices posted at the listserv/forum dedicated to my oldest son’s disability.
The following is a flier I saw on the bulletin board of an outdoor swimming pool (I also saw folks recruiting that study at a local park):
(update: oh, goody… I think I should email the investigator about the new FDA safety alert and recall of homeopathic teething tablets!)
Nationally, there is a way to search for clinical trials: Clinical Trial Search Page. Except those trials often involve drugs, the less invasive and more common trials are not there.
2) What do you get for participating?
Well the first thing you get is cold hard cash. Each and every time I showed up with my guinea pig kids I was given cash or a check (about $10 to $40). My then nineteen year old younger son, MathMan, was given a check after he gave a DNA sample to the study.
What you also get is a peak into how research is done, and perhaps learn something about your child, and about children in general.
3) I saw the word “paperwork” lots, what do you mean?
Ah yes, the piles of paperwork. No one gets anything from the parent without permission! If you fail to permit photographs of your child at school, they will not be in the yearbook (so don’t pay the over fifty dollars for a yearbook if you miss that particular piece of paper to sign). And that is multiplied if it is really important. To understand the magnitude of what you are signing, check out the rules: Special Protections for Children as Research Subjects.
4) What could happen if my kid is just asked some questions?
Your child’s privacy could be invaded; this is not a trivial concern. I know when MathMan was interviewed at age fourteen he said things that he would not want me to know about (and I still don’t know!). After he graduated from high school he admitted to me (his mother) that he had feelings that he now feels very stupid about. So, please respect your teenagers’ privacy, and remember they do grow up. The papers you sign should include a clause that no person, including yourself, will have access to your teenager’s private life. Yeah, it is totally sucky… but you have to look at the long term, plus that you are contributing to Science Based Parenting.
If you have followed this long, here is MathMan at work. He is the “blond hero” (who swings on the rope). The other guy, the “villain”, also submitted a DNA sample to the same study (they went to the same middle school and were part of the one in four accepted to the study).
(For those whose children ages are still in single digits, please familiarize yourself with the teenage brain… one of the best way is following the comic: Zits. My younger son thought the authors had a camera set up in our house! Remember: forewarned is forearmed!)
Much thanks to Rob Tarr for making my rambling actually coherent! Multiple thanks to my three children who were willing guinea pigs, and to Sharon Smith El Sayed of the Human Studies Division at the University of Washington for a fabulous conversation about these issues.