Download GENETICS OF READING DISABILITIES

GENETICS OF READING DISABILITIES
Introduction to the Study
Investigators: Cathy Barr, Maureen Lovett, and Elizabeth Kerr
Purpose of the Research:
Abundant evidence suggests that reading and learning abilities run in families and that both genetic and
environmental factors influence the predisposition to having reading disabilities. The aim of this study is to identify
genes that may contribute to reading ability and disability.
Description of the Research:
The study includes both of the following:
1. Information about reading achievement, related learning abilities, and behaviour will be obtained about your
children. This will include an interview, questionnaires, and tests for reading, learning, and language skills. We will
give you a short assessment report, summarizing the information that we find out about your child and a list of local
resources you may want to contact. This report can be sent to your child's school for further interpretation and
recommendations if you desire and provide a written authorization permitting communication with the school.
2. For genetic studies, a blood sample will be taken from you and from your children in order to identify and study
genes which may be important in reading disabilities. DNA (the molecule which makes up genes) will be isolated
from the white blood cells.
Potential Benefits:
Although you may not benefit directly from this study, results from the study may improve the understanding of
how and what genes are involved in reading disabilities. Reading disabilities are thought to be related to several
genes. Therefore, even if we are able to identify one gene, it may not predict the development of reading disabilities in
every case. Because the genetic tests cannot tell you absolutely if you will have reading disabilities if you inherit one
susceptibility gene, our findings from you and your child's genes will not be released to you or to anyone else.
Information about the progress of the study and findings in the field are available upon request. Psychoeducational
test results will be given to you and to your child's school if you desire.
Potential Harms (Injury, Discomfort or Inconvenience):
A blood sample will be taken from each participating family member's forearm by a trained person (20-40 cc or 13 tablespoons). The reading tests will take a maximum of 1 day for this study, which may be inconvenient for you.
Confidentiality:
Confidentiality will be respected and no information that discloses the identity of you or your child will be
released or published without your consent, unless required by law. For your information, the research consent form
will be inserted in your child's health record.
Results of the psychoeducational tests given will be used primarily for research purposes; however, results will be
available upon request for clinical purposes if needed. We would need your permission and signed consent to send
test scores to another professional involved in your child’s care.
The genetic information collected during this research relating to you will be kept strictly confidential. You and
your child’s anonymity will be protected at all times by storing the information collected in locked files using a coded
identification number which is available only to the researchers in this project. No information that discloses your
identity will be released or published without your consent.
The genetic material isolated as a result of this study will be stored only with a coded identification number so that
as new genes are discovered which are involved in reading disabilities, it is possible for research in this area to
continue.
For more information contact
Tasha Carter, Clinical Research Manager at 416-813-8207