Request Form

You have the right to withdraw your consent at any time by contacting your healthcare provider or by emailing contact@storegene.com. Under data protection laws you also have the right to:

• Access your personal data
• Request obtaining for data
• Request correction, completion or update of your personal data.
• Request erasure of your personal data
• Informed about the legal basis and purpose for collection

If you wish to exercise any of the rights set out above, please contact your healthcare provider or email contact@storegene.com. If your data is being processed by StoreGene on behalf of your health provider, then StoreGene will seek approval from the health provider as the data controller, before being able to act on your request. The response to your request will be at the discretion of the data controller. StoreGene commits to initiate this approval process within 7 days of receiving any request. The response to your request from the data controller should be provided within a month of confirming your identity. Occasionally it could take longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated. After contact we may request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that your personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response and aim to do this within 7 days.

• All of us have DNA in our bodies; this is the instruction manual that tells our body how to grow, develop and function. It is also a biological code that can be used to identify us and can say who we are related to. This is the code we pass on to our children that influences how they grow, develop and function. DNA can play a part in our health and disease; scientists and doctors often use a DNA test to see if the DNA is altered in some people, which could be linked to current disease or future disease risk.
• DNA is of particular interest to scientists and doctors who explore whether medical conditions are inherited in the family. There are several different words that are often used interchangeably in relation to DNA testing (e.g. genetic, genome, whole genome sequencing), but all of these basically relate to the same thing, which is the ability to look at DNA to see if it offers clues as to why disease occurs. Being able to test a person’s DNA also helps scientists and doctors understand how to predict disease and potentially treat it. Because there are similarities in the DNA of different people, the results of testing one person can help the interpretation of a disease in another person.
• The best way to explain your genome is to say it is your body’s ‘instruction manual’. It contains nearly all the information needed to make you, run you, and repair you. You inherited it from your parents and in turn you pass it on to your children. Therefore, the outcomes of any DNA test may be of interest to not only you, but the people you are related to.
• Genes are the basic “instructions” for the cells that make up our bodies. All genes are made of DNA. The DNA of a person is more than 99% the same as the DNA of any other person, but people do not have exactly 100% the same DNA unless they are identical twins. The complete set of DNA in your body, including all its genes, is called your genome.
• Although our DNA is very similar to each other, your DNA data is entirely unique. Variations in the genome explain some of the physical differences between people, and partly explain why some develop diseases like cancer, diabetes, asthma, and depression, while others do not. At present, it is not always possible to predict which changes in DNA lead to disease or health.

• We will send your biological sample to a laboratory based in Saudi Arabia.
• Your sample will be labelled with a unique barcode instead of your name.
• We use the code to keep track of your sample.
• Once this process is completed, the data is transferred from the laboratory to StoreGene servers within Saudi Arabia. During this transfer your data is checked to ensure that it has not been damaged by matching signatures sent with the data file, and your barcode is used to link your whole genome data to your patient profile.
• Your sample is destroyed 30 days after the DNA has been extracted, the laboratory deletes any data within 30 days after it has been transferred to StoreGene, and the genome data is stored in the StoreGene secure data cloud unless you request for it to be deleted.

A healthcare professional can run a template to analyse your genome data and discuss with you the outcomes which include:

• Finding an alteration in the DNA that is the cause of the condition.
• Finding an alteration in the DNA that cannot be interpreted with current scientific knowledge; this may change over time as scientific knowledge improves, in which case you need to ask your health professional if they will get back in touch in the future
• all results
• results that might be helpful to prevent or treat your disease.

A template first identifies positions in your genome that have been shown to be relevant in disease from research by academics. It then calculates what this means and lays the insights out in a pdf report that is made available to your clinician to discuss with you. DNA alterations cannot explain all inherited conditions. Reasons for this include:

• the variant causing the condition cannot be found by the test;
• the gene causing the condition was not tested;
• the gene causing the condition is not yet known;
• the condition may not have a genetic cause.
• several DNA alterations, possibly in different genes, are required to have a condition