Frequently Asked Questions

Blood Draw

Where can I go to have blood drawn?

Our study team can collect the blood sample at Penn. This visit can be combined with a time to fill out study questionnaires, to make participation as convenient as possible.

If it is not possible for you to make it to Penn, we can send you a kit to have blood drawn elsewhere, if there is a lab convenient to you that can do this.

Are there any alternatives to a blood draw?

If a participant is unable to tolerate a blood draw, DNA will be collected from saliva samples. Even though DNA can be isolated from saliva, the most effective way to prepare DNA is from a blood sample. Therefore, blood samples will enable us to perform more comprehensive analyses.

Genetic Testing

Will I get a report of my genetic results?

Genetic testing is being done for research purposes, not for clinical purposes. If a medically-actionable gene variant is found as part of genetic testing, a participant can choose to be notified of this information. A “medically-actionable” gene variant is a variant that could be used by your doctor to guide your medical care.  There is a list of medically-actionable gene variants determined by the American Society of Human Genetics.  Participants will indicate if they wish to have this information communicated with them and/or their health care provider on the consent form.

What if I have previously participated in ASD or genetic research?

Occasionally, participants may be asked if they would be willing to release collected data as a part of other research studies. This may enable participants to opt out of certain assessments that were recently administered elsewhere (for example, at the Center for Autism Research at the Children’s Hospital of Philadelphia).

Neuropsychological Testing

Will I receive a report with results from neuropsychological testing?

The information collected during this study is for research purposes only, not for clinical purposes. At this time, ASPE is not designed to provide clinical assessments and/or treatment. However, your participation could help us better understand the causes of ASD/Asperger syndrome, which may benefit you indirectly in the future.

Privacy & Confidentiality

How will my personal information be protected?

All data collected in this study will be stored under a study code number, without any information that may identify you. Only authorized study personnel will have access to your direct identifiers, such as your name and other personal information. To prevent unauthorized access to your personal information, all research data and records will be stored electronically in a secure, encrypted, password-protected database with limited access use and access privileges.

The research team will not insert any information, including your genetic results, into your clinical electronic medical records.

To help us further protect your privacy, we have obtained a Certificate of Confidentiality from the National Institute of Health. Our research team can use this Certificate to legally refuse to disclose information that may identify you and link you to this research study.

How will my genetic data be protected?

Even without your name or other identifiers, your genetic information is unique to you. The researchers believe the chance that someone will identify you is very small because your samples will be coded.

Very rarely, health or genetic information could be misused by employers, insurance companies and others. Because of the privacy safeguards that we have outlined above, we believe the chance these things will happen is very small, but we cannot make guarantees. A federal law called the Genetic Information Non-Discrimination Act (GINA) helps reduce the risk from health insurance or employment discrimination. It is illegal for health insurance providers to use or require genetic information to make decisions about a person’s insurance eligibility or coverage. It is also illegal for employers to use genetic information when making decisions about hiring, promoting, and several other terms of employment.