My sister has a set of fraternal twins who have been subjects of a twin study at Vanderbilt Hospital in Nashville, TN.
My nephews are 16-years old now, but went through the first study when they were two. One of the boys has severe autism, while the other does not show any signs of autism.
The first study they were involved in was a twin study involving children with autism, where their twin did not have autism. The study used the Batelle Developmental Inventory to compare the differences between the two boys on their performance. The boys attended two sessions during the study which were six weeks apart. As part of the research process each child was screened for Fragile X and she learned that her son did not have Fragile X.
The information that was gained from this research project was used to develop an early detection assessment tool. Researchers were able to come up with a method (or an instrument) to detect autism before the age of three.
My sister has explained that as a research subject (or a parent of a research subject) she was not given the specifics of the study.
My nephew who has the autism, has been a subject in three additional studies, two on autism and the third was a gene study.
Due to confidentiality my sister could not divulge specifics of any of the studies as she had to sign confidentiality statements.
4 comments:
Crystal,
As a parent I am sure your sister wonders how it could be that she has two children with very different needs and abilities. However, her willingness her and that of her sons' to participate in research studies, has helped reveal useful information. Although the first study you mentioned might not be directly beneficial to your sister's family, it sounds like researcher have been able to develop a useful assessment tool as a result of the study. A good example of the benefits of research!
After learning about the ethics of conducting research and informed consent, how did you feel when your sister mentioned that she wasn't made fully aware of the specifics of the research? How did your nephews feel about participating in the study?
Keshika,
My nephew who is not autistic doesn't really remember it as they were so young and he has not been involved in further research. My nephew who has autism is non-verbal (he is severely autistic) and of course is unable to communicate his feelings about the research projects in which he has been involved.
My sister was not given specific results of the research project. She was made aware of what type of testing they were doing and what they were intending to do with the results from that first study. The subsequent studies she didn't seem to know as much about, but she was very preoccupied when I talked to her about the process. One of the studies he was involved in had to do with a certain vitamin deficiency he had, but nothing ever came back as to why he had this deficiency.
Crystal,
Thank you for sharing your nephews story. I bet as a parent it was difficult for your sister to watch her children go through those studies. Did your sister have any reservations about having your nephews participate?
Crystal,
I find it incredibly interesting that your sister has that story to share.
Twins are such fascinating subjects- even just as players in our personal lives! My husband is a twin, their father is a twin, and my husband's twin had twin boys. Watching these three generations of men and boys has been an informal study for our family! We compare and contrast the behaviors and appearances as well as patterns and unique concepts. Being married to one of them and having provided child care to my twin nephews I have been able to *almost* understand some of the special and unique experiences twins share.
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