Your privacy and the confidentiality of your medical information are of the utmost importance to us!

All identifying information will be removed from the data that is transferred to the Psifas database.

The main risk associated with your participation in Psifas is to your privacy. A data breach occurs when an unauthorized person discloses or uses your personal information without permission.

Psifas has developed and built several data security mechanisms to protect your information and privacy.

 
  • The deidentified medical information (with your identifying details removed) will be stored on secure computers, and access to these computers will be closely supervised. After you provide your consent, your medical information at your HMO or hospitals will be transferred, again without your identifying details, to dedicated Psifas computer servers. All identifying details, like your name, ID number, and address, will be removed from your medical record, and the researchers who are permitted to use the Psifas databases will not be able to access your identifying details.
  • Unless you decide to withdraw your consent (see Withdrawing from the Psifas Community), your information will be stored in the Psifas databases without any time limit, and will also be updated periodically.
See process for leaving the Psifas community
  • We at Psifas are aware that, even after removing your name and other identifying information, there is a very small chance that someone will be able to identify you within the unidentified database. Maintaining data security and the privacy of our volunteers is of the utmost importance, and we have built a security system along with the Privacy Protection Authority, the National Cyber Authority, and the Ministry of Health. A skilled team of veterans from the Israeli Security Forces have created a dual protection system to isolate personal details from the medical information. This is a sophisticated system based on individual “safes” that will protect privacy breaches.
  • As mentioned, even though the information is unidentified, the researchers’ access to the Psifas databases will be limited and strictly controlled. Firstly, each study must be approved in advance by the Ministry of Health’s Helsinki Committee and then the study must be approved by a Psifas committee. The researchers who will be allowed to access the Psifas databases will sign a commitment letter that details the restrictions that apply to the use of the information. At every stage of the study, the Psifas team will monitor the researchers’ use of the databases.
When will we request to identify you personally?
As mentioned, everyone who participates in Psifas gives blood for genetic testing. Even though your DNA is sequenced for research purposes, it is possible that, during the sequencing, a mutation will be discovered – a genetic anomaly that may result in a health risk. For example, we might discover a genetic mutation that dramatically increases your risk of cancer or sudden cardiac arrest. We estimate that these mutations, known as “actionable genes” (genes or mutations that require action) will be discovered in around 3-4% of the Psifas volunteers.

We retain the ability to contact these volunteers for precisely these cases. We keep a table in a separate “safe” in a separate location that enables us to identify patients within the anonymous database and invite them for genetic counseling. *This invitation will be made subject to the volunteer consenting to receive information about his/her medical status during the first stage.

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If you decide to cancel your participation in the Psifas project, you can let us know by Email: info@psifas.org.il

After sending the request, your information will be removed from the servers where it is stored, and the periodic update of your medical information from the partner health organizations will cease. However, we will not be able to remove your information from research databases that have been temporarily established for a specific study that has already been approved at an earlier stage, as we will not be able to identify your information within those databases. Once the study has been completed, the information gathered in its dedicated database will disappear, including your records.

As mentioned, everyone who participates in Psifas gives blood for genetic testing. Even though your DNA is sequenced for research purposes, it is possible that, during the sequencing, a mutation will be discovered – a genetic change that may result in a health risk. For example, we might discover a genetic mutation that dramatically increases your risk of cancer or sudden cardiac arrest.

We estimate that about 4% of the Psifas volunteers will have genes called Actionable genes (genes or mutations that predict a high frequency of disease risk).

We retain the ability to contact these volunteers for precisely these cases. We keep a table in a separate “safe” in a separate location that enables us to identify patients within the unidentified database and invite them for genetic counseling. *This invitation will be made subject to the volunteer consenting to receive information about his/her medical status during the first stage.