FAQ - Whole Genome Sequencing (WGS)

With whole genome sequencing (WGS), we read the entire DNA of tumor cells. Staff at the Laboratory for Pediatric Oncology first extract the DNA from the cells using specialized techniques. Advanced equipment then translates the genetic information into a diagnosis. Based on this diagnosis, the treatment that best suits the child is determined.
Previously, only the part of the DNA that codes for proteins—just 2 percent of the entire DNA—was used for this purpose. Thanks to the move to whole genome sequencing, we now gain a much more complete and precise view of the tumor. This helps us tailor treatments even more closely to each individual child.

By determining a child's type of cancer as precisely as possible, the Princess Máxima Center aims to offer each individual child the treatment most likely to work for them. By analyzing the complete DNA of a tumor cell, we gain a full picture of all genetic changes. This approach helps tailor treatments to a child’s DNA profile. It also allows for more precise monitoring of the tumor during treatment, at the molecular level.

With whole genome sequencing (WGS), we read the entire DNA of the tumour cells. This allows us to establish the exact diagnosis and determine the treatment that best suits the child. We obtain the tumor cells from blood collected during a routine blood draw and/or from a biopsy taken during a procedure under general anesthesia. For some children, this procedure is performed solely to enable an accurate diagnosis.

In whole genome sequencing, we examine the DNA of the tumor. This allows us to determine exactly what type of cancer is involved and which treatment is best for the child. In some cases, we also look at a small number of hereditary genes (germline genes) that may indicate an inherited predisposition to childhood cancer. We do this only if that information is important for treatment or for monitoring (follow-up) of the child. We only look for genes that fit the type of tumor-for example, solid tumors, leukemia or brain tumors. So, we do not investigate predispositions to other diseases.

No. DNA data obtained from sequencing tumor cells will be used primarily by physicians in the care department to determine the exact diagnosis and, where possible, provide treatment at size. If consented by parents and/or the child, remaining tumor tissue will be stored in the Máxima Center’s biobank and whole genome sequencing data can be used for research purposes.
As a scientific research institute, the Princess Máxima Center always requests explicit permission from (parents of) patients prior to treatment for the use of bodily material and data for scientific research. (Parents of) Children may withdraw this permission for future use of stored body material and data for scientific research at any time.

As part of scientific research, researchers from different institutes work closely together. They do this to bring together knowledge and skills, and carry out their research faster and better. As a result, the scientific community has been able to make the steps they have made up to this point.
With that aim, the Princess Máxima Center shares data from children with researchers outside the Máxima Center. The use and sharing of data will only be allowed after the following criteria are met: 1) Consent has been given by (the parents of) children for the use of data for research purposes; 2) a research proposal is submitted to, and approved by the Máxima’s Biobank and Data Access Committee (BDAC), an independent committee responsible for the assessment of research applications; 3) data is shared through a highly secure environment.

When shared, data is shared digitally under strict criteria and in compliance with the privacy and security policies of the Princess Máxima Center.

To ensure the privacy, protection and integrity of patient data, the Princess Máxima Center encrypts the collected DNA data and stores it with appropriate technical and organizational measures at a security level appropriate to the risk.
Technically, moreover, the tracing of DNA data is only possible using large-scale computing power and in combination with access to databases within which a link has been made with these DNA data and other identifiable data (such as name/address).
Processing DNA for research at the Máxima is subject to strict conditions and privacy legislation (GDPR) prohibits the use of special category personal data (including DNA data) if specific conditions, such as explicit consent, are not met.