Confidentiality
Participation in the Family Studies in Epilepsy Program is completely confidential. This sample will be stored in the laboratory of the principal investigator, Dr. David A. Greenberg, at Columbia University. No personally identifiable information will be collected or stored with your saliva sample. Nobody will be able to link this information back to you.
- Our epilepsy genetics studies have been approved by the Institutional Review Board of Columbia Presbyterian Medical Center, which assures the safety and confidentiality opf participants in research studies. We also have a Certificate of Confidentiality from the National Institutes of Health.
- At the moment, we are unable to make any predictions of statements about an individual’s risk for epilepsy based on our research. Thus, the results of any tests we do have neither diagnostic nor predictive value to the patient, or to anyone in the patient’s family. For this reason, the results of any tests we do will not be available to you, to anyone in your family or to anybody else. They are purely for research purposes and are useful only when combined with the data from other participating families and controls. Because we are not genetic testing, the results of this research will not allow us to know if subjects carry a gene for any disease. No one — not even you – will be able to link this information to you.
- Information about your participation and results from this study will not be placed in your medical records. No insurance company, employer or potential employer, or any other person will have access to any o f your information.
Contacting us for information about the Family Studies in Epilepsy Program carries no obligation to participate. You may discontinue your participation at any time without penalty. Your decision to participate will not affect your routine medical care that you get from your physician. Please keep in mind that we are independent researchers and are not involved in medical care – we cannot advise you about your treatment or about potential genetic risks. Nor can we advise about genetic counseling issues.
Participating in our study is free and voluntary. We offer no financial incentives.
Our research is nonprofit and supported entirely by the National Institutes of Health and has no sponsorship from any pharmaceutical company or any profit-making organization.