This document provides background information on your genetic testing as well as the possible risks involved in knowing genetic information about yourself. It also records your agreement to taking the test.
You are reading this because you have decided to use a myDNA.global genetic test to help you understand your genetic ancestry. This involves reading or "genotyping hundreds" of thousands of letters of your DNA (your 'genetic raw data') and comparing them to others in databases available to us so we can provide you with an interpretation. Your DNA contains information not only about ancestry, but also about disease risk and reaction to medications. While these are not part of the analysis and are not returned to you, information of this kind can be inferred from your genetic raw data. For that reason we will describe in more detail the relationship between DNA and disease risk. If your genetic raw data are compared to others they could reveal family relationships as distant as fifth cousins or further. We want you to understand the possible uses of the genetic information as well as the potential consequences of knowing about it. We will refer to the analysis you will be given as your ‘ancestry interpretation’, in contrast to your genetic raw data which is used to create this information and 'genetic information' which includes both. Once you get any part of your genetic information, it cannot be taken back.
You will donate a sample of saliva into a collection tube containing a preservative. The tube will be marked only with your ID code and posted or otherwise transported to a lab where the DNA will be extracted from the saliva. We will then use so-called "gene chips" to read or genotype hundreds of thousands of letters of your DNA. Each letter we look at varies between people – at a given position some people might carry a letter A, others a letter T. We call the list of your individual letters your genetic raw data. These variants or markers provide the information about ancestry and family relationships, as we each inherit them from our parents, and in turn from their parents and so on back in time. If these variants happen to be in a piece of DNA which encodes part of the blueprint or manual for building or running our bodies (our genes), then they can also influence our risk of developing a disease. However, most of our DNA does not have a known function and most variants are not involved in disease. Once we have read your genetic raw data we compare this to large numbers of samples to learn where your DNA fits in with everyone else's and create your ancestry interpretation. Your genetic information will be held confidentially by myDNA.global and not shared with others without your permission. Your name, address and other identifiable details will be held separately from your ID code which will be attached to your genetic information.
RISKS OF TESTING
You may learn information about yourself that you do not anticipate. This information may evoke strong emotions and have the potential to alter your life and worldview. You may discover things about yourself that trouble you and that you may not have the ability to control or change (e.g., surprising facts related to your ancestry). These outcomes could have social, legal, or economic implications. If you acquire an interpretation of your disease risks based on the raw data of your genome scan or if you and other family members are tested and share genetic raw data or if you share raw data with others, then different risks apply. None of these are part of the standard myDNA.global test; nevertheless you should be aware of the potential risks and they are outlined below. For example if you and your father take the test and share raw data, you might discover that he is not genetically your father or if you have acquired an interpretation of disease risks, you might find out that someone with your particular DNA letters or genotype may have a higher than average chance of developing a specific disease. The laboratory process may result in errors. A very small, but unknown fraction of the data generated may be difficult to interpret or incorrect.
While you will not receive risk information as part of this test, it is important to understand that the raw data contain this kind of information if an analysis were to be done. Certain genetic markers are associated with a higher rate of certain diseases or health conditions in certain populations, but it is not yet possible to predict health and disease accurately at the individual level. This is because (a) most diseases are due to both the environment (e.g. your diet, exercise, sunshine exposure) and genes; (b) the present understanding of disease genetics is very incomplete – there are many as yet undiscovered genes and variants affecting the chances of getting a disease which we do not know about and so which are not included in the testing; and (c) the relationship between a person’s genetic information and their disease risk can vary according to their ethnicity, so it is not possible to predict from studies in one population to individuals from another. It is also important to understand that the interpretation of the same genetic profile will change through time, as geneticists’ understanding of our genes improves. You should not change your health behaviours on the basis of this information – there may be unknown genes, environmental factors or lifestyle choices that are far more important predictors. If your data indicate that you are not at elevated genetic risk for a particular disease or condition, you should not feel that you are protected. The opposite is also true; if your data indicate you are at a higher genetic risk for a particular disease, it does not mean you will develop the disease. If you have concerns you should contact a health professional. Some information regarding disease risks would not be positive in nature. However only a very small proportion of the variants tested might be related to human health conditions and we will not return any of this information. There is a special subtype of DNA variant, called a Mendelian variant, which have a more direct relationship to disease risk, with often a nearly one to one correspondence between carrying one or two copies of the variant and having diseases like cystic fibrosis, familial breast cancer and others. A small number of these markers might be tested in the genome scan, but we will not analyse or return them to you.
You share half of your DNA with your mother, father, children and siblings. You share about one quarter with your grandparents, grandchildren, uncles, aunts, nieces, nephews and half-siblings and about one eighth with your first cousins and rapidly decreasing amounts with more distant relatives. However because there are so many DNA letters and hundreds of thousands are tested, it is possible to spot when people share DNA in this way. It is possible to compare your genome scan with other people in this way and so potentially find relatives you didn’t know about.
Should you request and download your autosomal raw data you will get a computer file with hundreds of thousands of rows in it with the variant names and DNA letters you carry at each. At present only specialists can make sense of the raw data, however this may change in the future. Genetic data you share with others could be used against your interests. You should be careful about sharing your genetic information with others. Currently, very few businesses or insurance companies request genetic information, but this could change in the future. If an employer or insurance company obtained your genetic information through your sharing of it or by legally binding requirements, they could use your genetic data to deny you employment or coverage. Some, but not all, jurisdictions have laws that protect individuals from this kind of conduct. Genetic information that you choose to share with your doctor may become part of your medical record and through that route be accessible to health care providers and insurance companies in the future. Genetic information that you share with family, friends or employers may be used against your interests. Even if you share genetic information that has no or limited meaning today, that information could have greater meaning in the future as new discoveries are made. If you are asked by an insurance company whether you have learned genetic information about health conditions and you do not disclose this to them, this may be considered to be fraud.
When you take a myDNA.global test, we will collect and store information about you, including your contact and payment information. This is stored separately to your genetic data and is used to transact your purchase and may be used to improve services. The laboratory processing your saliva sample will analyse your DNA to determine your genetic information. The laboratory will not analyse your saliva for any biological or chemical components, markers or agents other than your DNA. The laboratory will not have access to your name or your other personal information, the sample will only be known by an ID number and unique bar code. myDNA.global have security measures in place to protect against unauthorised access to or unauthorised alteration, disclosure, or destruction of data. As with any security system, we cannot guarantee that our systems can never be breached. External parties will not be given any of your information without your consent, except to comply with legal requirements. Even if we are legally compelled to provide information, we will attempt to notify you before providing your information to external parties unless prohibited by law. You have the right to delete your genetic information from our systems. Within thirty (30) days of receiving your written request, we will delete your information including raw data and interpretation. For purposes of clarity, your genetic raw data associated only by barcode may be retained at the laboratory.
I give permission to myDNA.global, its contractors, and assignees to perform genotyping services on the DNA extracted from my saliva sample and to disclose the results of analyses performed on my DNA to me and others I specifically authorise.
I represent that I am eighteen (18) years of age or older.
I guarantee that the sample I provide is my saliva; if I am completing this declaration on behalf of a person for whom I have legal authorisation, I confirm that the sample provided will be the sample of that person.
If I am a customer outside the U.K., by providing my sample, I confirm that this act is not subject to any export ban or restriction in the country in which I reside.
I agree that my saliva sample and data may be transferred and/or processed outside the country in which I reside.
I am aware that some of the information I receive may provoke strong emotion.
I take responsibility for all possible consequences resulting from my sharing access to my genetic and other information.
I understand that information I learn from myDNA.global is not designed to diagnose, prevent, or treat any condition or disease or to ascertain the state of my health and that myDNA.global’s services are intended for educational and informational purposes only. I acknowledge that myDNA.global urges me to seek the advice of health professionals if I have questions or concerns arising from my genetic information.
I warrant that I am not an insurance company or an employer attempting to obtain information about an insured person or an employee.
I agree that this Agreement will be governed exclusively by the laws of Scotland and I submit to the exclusive jurisdiction of the Scottish courts.
I will hold harmless myDNA.global, its employees, contractors, successors, and assigns from any liability arising out of the use or disclosure of any information that is obtained from genotyping my saliva sample, that is disclosed to me consistent with our privacy statement and resulting from any third-party add-ons to tools we provide. In addition, if I choose to provide my genetic or other information to third parties – whether individuals to whom I facilitate access, intentionally or inadvertently, or to third parties for diagnostic or other purposes – I agree to hold harmless myDNA.global, its employees, contractors, successors, and assigns from any and all liability arising from such disclosure or use of my genetic or other data. Please see our terms and conditions for a complete understanding of other terms applicable to our services.
If you have further questions please contact: support@myDNA.global or call on 0345 872 7634