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frequently asked questions

frequently asked questions

About Signing Up

  1. What is included in deCODEme´s services?

    2. Signing up for a deCODEme account is free. The deCODEme Genetic Scan and associated services come at a special introductory price of $985. The scan includes:

    • A DNA sample collection kit (buccal swab kit) sent to the address specified by you.
    • Instructions on how to use the DNA sample collectors.
    • A return envelope and shipping label addressed to our laboratory.
    • A scan of 1 million SNPs (Single Nucleotide Polymorphisms) of your genome done in deCODE´s laboratory, in Reykjavik, Iceland (referred to as a deCODEme Genetic Scan).
    • Informational resources designed to help you to get to know your genome, to understand more about your ancestry, to compare parts of your genome to that of your family and friends and some famous people, and last but not least, to help you compare your genetic data to results of reliable scientific publications on the genetic variations of groups of people who have common diseases and those who do not.
    • As new discoveries are made, you will receive updates on how to check your genome against the breakthroughs in the headlines.

  2. Who can buy deCODEme?

    3. deCODEme services can be bought anywhere in the world.

  3. How do I sign up?

    4. Signing up for a deCODEme account is free. On the deCODEme homepage you will find a sign up button. Click the button and follow the instructions provided. We do also provide a quick family signup.

    First you will be asked to choose a username and password. Note that usernames can not exceed 22 characters in lenght and can only contain the letters a-z (upper or lower case), the numbers 0-9, and/or the symbols for period ("."), hyphen ("-") and underscore ("_"). Take your time to choose a password that is easy for you to remember but difficult for others to guess. Your password should be at least 5 characters, and it´s a good idea to mix letters and numbers when creating a secure password.

    Before signing up and creating an account, you will be asked to read and agree to the deCODEme website´s terms of use.

    Once within your personal account, you can place your order and make an on-line payment for a deCODEme Genetic Scan.

  4. How does family signup work?

    5. We do provide a special family signup that enables you to signup a whole family in a single step. Unlike our regular process, where you create an account and order a Genetic Scan for the username you created, you can order multiple Genetic Scans with a single payment. Multiple user accounts will be created and buccal swab kits for each family member will be sent to your home.

    Currently, we provide a special family signup discount: 7.5% for families of 4 to 7 members and 10% for families with 8 or more.

  5. What do I need to know about the Genetic Scan before signing up?

    6. Remember that the deCODEme service is an information service aimed at empowering you to get to know your genome, helping you to understand more about your ancestry, to compare parts of your genome to that of your family and friends and some famous people, and last but not least, to compare your genetic data to results of reliable scientific publications on the genetic variations of groups of people who have common diseases and those who do not.

    As stated in the deCODEme Genetic Scan Service Agreement and Informed Consent, the deCODEme Genetic Scan is for informational purposes only; it is not a medical test, and it is by no means a substitute for professional medical advice, genetic counseling, diagnosis, or treatment.

    If you have questions regarding the genetic aspects of a medical matter you must seek the advice of your physician or other qualified health provider and you must not disregard professional medical advice or delay in seeking it because of the results of your deCODEme Genetic Scan or anything you have read on the deCODEme site.

  6. Can I sign up for only the ancestry part of deCODEme?

    7. Yes. Once you have ordered a Genetic Scan you can contact our customer services to disable disease risk analysis for your account.

  7. How can I pay?

    8. On-line payments can be made from anywhere in the world by using our secure credit card payment service. Payments can also be made using a deCODEme Gift Certificate.

  8. Will my insurance company pay for deCODEme´s services?

    9. deCODEme is an anonymous information service. It is not a medical service, nor a genetic test, and it is not designed for medical decision making. Therefore it is not covered by health insurance companies.

  9. Can I cancel my order and get a refund?

    10. There is no charge involved in logging on to the deCODEme website and creating an account.

    When you order the deCODEme Genetic Scan you will be charged. Upon payment, we start processing your order; bill your account, send you the DNA sampling kit.

    Should you change your mind about continuing our services after this point, you can e-mail our customer service department a cancellation request. They will confirm the reception of your request and notify you of your refund status according to the following refund policy:

    • If your cancellation request is received after we have started processing your order, you are entitled to a full refund minus $100 per kit sent to you. Refunds will be processed within 30 days of your confirmed cancellation.
    • If you have already used the DNA kit and mailed us your sample we cannot offer you a refund. However, if you still want to terminate your account and deCODEme services, you can do so. We will delete your genetic data from our systems within 60 days according to our termination policy.

  10. Can I get a discount?

    11. Yes. A volume discount is available through Family Registration and Gift Certificates.

  11. For how long will I have access to deCODEme services?

    12. Currently, creating an account on the deCODEme website is free. You will have access to your deCODEme account as long as you do not send us a request to terminate it. We reserve the right to charge additionally for special future additions to the website.

  12. Does the billing address and shipping address have to be the same?

    13. No. The billing address and shipping address can be different. See next question on giving an account as a gift.

  13. Can I buy a deCODEme Gift Certificate?

    14. Yes. deCODEme offers Gift Certificates that you can buy and use as a gift for family and friends. To buy Gift Certificates, you need login to your account and locate the Order menu item The Gift Certificate contains a code that can be used as a payment for a Genetic Scan. You can also choose to have the sample collection kits sent to you when buying the Gift Certificate(s) if you want to include them in your gift. In that case there are created user accounts that are linked to the sample collection kit. Information on the username and password will be provided with the sample collection kit. The holder of the sample collection kit will then activate the predefined user account by changing the password, accepting the "Terms of Use" and "Service Agreement and Informed Consent" and pay using his Gift Certificate code.
    Currently we provide a volume discount; 7.5% off purchases with 4 to 7 certificates and 10% off 8 or more.

About Samples and Data Analysis

  1. What kind of a DNA sample do I need to provide for the deCODEme Genetic Scan?

    2. You will need to provide a so-called buccal swab which is obtained by scraping off cells lining the inside of your cheek. The DNA sampling kit includes two buccal swab DNA collectors and instructions on how to use them. You can also view a video demonstrating the proper use of the collectors.

  2. Why use a buccal sample?

    3. Our laboratories have tested and compared various methods of DNA sample collection and found the buccal swab method to outperform other methods, such as for example saliva samples, in terms of the amounts of DNA obtained and the reliability and reproducibility of the DNA sample. Our laboratory has therefore proceeded to validate the buccal swab method of DNA sample collection and processing.

  3. Where do I ship my DNA sample?

    4. You will receive a return envelope with the shipping address.

  4. How long will it take to process my sample?

    5. It will take our laboratory about 2-4 weeks to process your DNA sample and upload the data to your personal deCODEme account. You will receive a notification to your provided e-mail and at your personal deCODEme account when your data is ready for viewing.

  5. Where will my DNA sample be analyzed?

    6. Your DNA sample will be analyzed at our genotyping laboratory in Reykjavik, Iceland.

    deCODE genetics is a biopharmaceutical company developing drugs and diagnostics for common diseases based upon its global leadership in human genetics. deCODE operates one of the largest DNA genotyping laboratories in the world and has analyzed DNA from more than 300,000 people from around the globe, including more than half of the adult population of Iceland taking part in the company´s gene discovery work.

    As a pioneer in human genetics the company has also led the world biomedical community in the development of proprietary data and privacy protection systems for genetic information.

  6. Which technology is used for the genotyping?

    7. Currently, the deCODEme Genetic Scan is performed with the new Illumina Human1M BeadChip developed in collaboration with deCODE genetics.

  7. How does the Genetic Scan technology work?

    8. For more information see the Illumina website.

  8. How many SNPs will be genotyped?

    9. Currently, deCODEme uses the new Illumina Human1M BeadChip which was developed in collaboration with deCODE genetics and features more than one million SNPs for genotyping. This means that one 1 million data points of your genome will be read. You will have access to the entire dataset, as well as tools to browse it. You can also download the actual genotypes from your secure deCODEme website at any time.

  9. What will happen to my sample after it has been analyzed?

    10. Your sample and all DNA derived from it will be destroyed after it has been analyzed and the results securely stored in your deCODEme account.

  10. What kind of a report will I get?

    11. Your deCODEme results will not reside in a single static report, but in an ever evolving information-rich and secure web account. The account will include your actual genotypes for the one million SNPs analyzed. You will be provided with the tools to compare the variants in your genome to variants in other people´s genomes and to interpret them within the context of published scientific literature on disease risks or benefits, on where your ancestors come from, and on certain personal traits.

    To help you evaluate disease specific risks and benefits associated with genetic variants, you will be provided with references to reliable, peer reviewed publications specifically linked to the SNPs analyzed. The information provided to you will tell you the relative number of people who have the same genetic results as you and the risk for a given disease as assessed for a group of individuals. This is to say that the risk assessments are based on the statistics of groups of people and apply only as such to individuals.

    For example, this can be compared to risk assessments for people with high cholesterol; we know from studies of groups of people, that having high cholesterol increases the risk of having a heart attack, compared to groups of people without high cholesterol, but we also know that not everyone with high cholesterol will have a heart attack and that people with normal or low cholesterol also get heart attacks.

    At this time many of the one million SNPs have no scientifically valid study results associating them with any information relevant to you or your health. As new results become known however, they will be added to our databases and made accessible to you through your deCODEme account. You will also have access to the variant information on every single one of the 1 million SNPs looked at. See also the vidoe tour.

  11. Will I have access to my raw data?

    12. Yes, you will have access to the actual variant information on every single one of the 1 million SNPs looked at. You will however not have access to the temporary data files from the laboratory instruments.

  12. Will I be able to browse my entire deCODEme Genetic Scan?

    13. Yes, through a genome browser tool provided by deCODEme, you will have access to the actual variant information on every single one of the 1 million SNPs looked at in the deCODEme Genetic Scan.

  13. Can I download my genetic data and take it to other applications?

    14. You are free to download your genotypes from the deCODEme Genetic Scan to your own private computer and use it within other applications. To ensure the security of the downloaded data it is delivered to you in a password protected file. Once you have downloaded and stored it on your own computer, the security and privacy of the data are of course your responsibility.

  14. What is my deCODEme genetic/genome profile?

    15. Your deCODEme genetic or genome profile is the complete SNP information on one million pre-defined positions in your genome. It is not the complete sequence of the genome.

  15. What diseases and characteristics are included?

    16. Our current list of diseases, health conditions and traits includes:

    This list will be updated continuously as new discoveries are made.

  16. How does the ancestry tracing work?

    17. The deCODEme ancestry or ethnicity tracing is valid for both the maternal and the paternal side. These are reported on separately in our report through the Y-chromosome markers (paternal lineage) and mitochondrial markers (maternal lineage).

    You will be able to use the results to tell yourself about your ancestry in the broad sense of ethnicity, but not specifically to trace your exact geographical origin. In fact this is very difficult to do and those claiming to be able to do so may quite frequently be providing more speculative results than factual.

    Where other services are generally only using sex specific transmission factors (mitochondrial and Y chromosome markers) our results take the whole genome into account. We compare your genetic similarity with over 50 ethnicity groups and we also analyze your ancestry down to individual chromosomal regions. We plan in the future to provide more specific ancestry/origin and ethnicity information than we have available now and this would be an update to our site available for no extra cost.

  17. How reliable is the information provided by deCODEme?

    18. The information provided by the deCODEme website is as reliable as the statistics of the scientific studies that our calculations are based on.

  18. How often will the information in my account be updated?

    19. We will update our databases and your account with all relevant information as soon as these have been reliably confirmed. You do not have to re-subscribe to get the updates. You will be notified of all updates as soon as they become available.

Estimation of genetic risk and selection of genetic variants (SNPs)

  1. What criteria does deCODEme use for selecting disease SNPs?

    2. It is imperative to note that deCODEme only reports risk based on well validated genetic variants (SNPs). Not only does deCODEme require that the association between genetic variant and a disease is truly statistically significant, it also requires that the association has been replicated in at least two independent studies. To include risk estimates based on unverified variants, that have only marginal evidence behind them, is unjustified and scientifically unsound.

    The lists of relevant genetic variants will be constantly updated as more candidates meet the criterion. The published reference from which a relative risk estimate is calculated is provided. It is however important to note that a user might not find the exact relative risk number displayed in deCODEme in the corresponding reference. This is because, in most scientific publications, the relative risks, or odds-ratios, estimated are usually between two alleles or two genotypes. Since the average population risk can be expressed as a weighted average of the risks of different genotypes, using results from the reference, deCODEme performs the appropriate calculations to calculate the risk of a genotype group relative to the population, making it easier for the user to interpret the results.

  2. Why does deCODEme in some cases exclude known disease SNPs?

    3. In some cases, variants with a verified disease association are excluded from the genetic risk estimates in deCODEme service. This is done when multiple variants from the same chromosomal region are strongly correlated and therefore redundant. In such instances deCODEme choose the minimum number of genetic variants that capture all the risk conferred by the full set of SNPs. In this case no information about genetic risk is lost from excluding some variants in the risk prediction.

  3. What about genetic variants that are still undiscovered?

    4. It is hypothesized (and very likely true) that the risk of developing most common diseases may be affected by a number of genetic variants, most of which are presently unidentified. Obviously, these genetic variants cannot be used to estimate disease risk until they are identified. Nevertheless, there is considerable value and predictive power in the risk estimates provided by deCODEme and others based on the current set of identified and verified disease associated genetic variants. When deCODEme reports the relative genetic risk, it is assumed that the impact of the still undiscovered or unconfirmed variants is the same for every person. This is equivalent to saying; if you don’t know a person’s cholesterol level, family history, or other currently known risk factors for heart attack, then your best estimate for his risk is the population’s average risk for heart attack. It is encouraging to note in this context that in many cases, the genetic risk variants that have already been discovered and are used in the service of deCODEme will be those that contribute the greatest risk of the disease in the population – because these tend to be the easiest variants to detect. A good example of this is the variant in the TCF7L2 gene associated to type 2 diabetes (discovered by deCODE Genetics in 2005), which is likely to be the single most important genetic risk factor in this disease in most populations.

  4. How does deCODEme model the genetic risk?

    5. For diseases with single confirmed SNP, the risk from the published reference is used. It is however important to note that a user might not find the exact relative risk number displayed in deCODEme in the corresponding reference. This is because, in most scientific publications, the relative risks, or odds-ratios, estimated are usually between two alleles or two genotypes. Since the average population risk can be expressed as a weighted average of the risks of different genotypes, using results from the reference, deCODEme performs the appropriate calculations to calculate the risk of a genotype group relative to the population, making it easier for the user to interpret the results.

    In our risk calculations for diseases with multiple SNPs, we assume that the risk associated with the different loci behaves independently, i.e. the risk is multiplicative in nature. This is a parsimonious model that usually fits the data of complex traits reasonably well, however, we emphasize that for many of the diseases the combined influence of multiple SNPs has still not been confirmed in clinical studies. When judged to be well supported by data, more complex models will be implemented.

Interpreting Results

  1. Can I get assistance on interpreting my genetic information?

    2. The goal of deCODEme is to introduce you to your genome in as simple terms as possible, using graphic displays to facilitate understanding of sometimes complex concepts and numerical facts. If you have questions pertaining to your genomic results, you can contact our deCODEme expert services and they will provide you explanations through an e-mail you provide or through a phone conversation should you choose to call us or send us your telephone number.

  2. Does deCODEme evaluate risks and benefits specifically for all ethnic backgrounds?

    3. deCODEme offers tools that allow you to evaluate your risk in terms of your ethnic background to the extent that this risk has been assessed specifically for your ethnicity.

    deCODEme links your genomic results with published scientific reports of disease risk associated with genetic variations. Most of these reports have tested and verified their results in at least two samples from different populations of different ethnic backgrounds. Not all reports however include risk results for all ethnicities. We will update the deCODEme information frequently as new scientific results are published.

  3. Why can´t deCODEme give me a diagnosis based on my genetic data?

    4. deCODEme is an informational service not a clinical or healthcare service. As such it does not provide you with a diagnosis of a disease, nor can it predict whether you will develop a disease in the future or not.

    The deCODEme service is designed to get you acquainted with your genetic code and provide you with an analysis of 1 million SNPs or genetic variations in your genome. Some of these SNPs have alone, or in association with other SNPs, been in large studies associated with the risk of developing a complex disease. We aim to provide you with the tools to link your genetic information to the information published in such scientific studies about the genetics of complex diseases, and the gene-environment interactions involved in the risk of developing such diseases.

    If you are looking for a diagnosis on the basis of symptoms you may have or a family history of disease, you should make an appointment with your doctor who can determine whether you should undergo specific diagnostic tests, genetic or otherwise, within your healthcare setting.

  4. How do I interpret the disease risk assessments?

    5. The diseases included in deCODEme´s Genetic Scan are all complex diseases, meaning that they are diseases determined by a complex interaction of multiple genetic variations (or many different SNPs) as well as multiple environmental factors. If estimated alone, genetic variations associated with risk of developing a complex disease may for example range from 1-20% over and above the risk for a person without the given genetic variation. This means that other genetic variations (still unknown by scientists) and multiple environmental factors account for the rest of the risk.

    Note, that even a 20% defined genetic risk associated with the development of a complex disease does not mean you will get the disease. It may however encourage you to evaluate the importance of minimizing the effects of manageable factors, environmental or others, for example your lifestyle, body weight, or adherence to treatment and prevention regimens recommended by you professional health care providers.

    The information provided by deCODEme should be used within this informational context, realizing that there are many other factors besides genetics that contribute to disease development of the complex diseases included in deCODEme´s information services.

    The goal of deCODEme is to empower you by helping you to get to know your genome. If the information provided raises questions or concerns about your health, we recommend you see your doctor and discuss other options of testing or implementation of approved preventive measures.

  5. Will I be able to compare my genome to public genomes of celebrities?

    6. Currently, only two famous people have published their entire genome; Dr. J. Craig Venter, one of the lead scientists of the Human Genome Project and Dr. James Watson, Nobel laureate, co-discoverer of the DNA double helix and often called father of the Human Genome Project.

    deCODEme includes features allowing you to compare your genome to the published genomes of these celebrities and of other celebrities as they become publicly available.

    Note, that the genotypes of Dr. Watson are derived from his sequence data. Due to low coverage in the sequence (incomplete sequencing), his SNPs may show abnormally high homozygosity (having the same variant on both chromosomes).

Privacy

  1. Who can view the information in my deCODEme account?

    2. Only you and those you decide to share your data with.

    deCODE Genetics has been working in large scale population genetic research for over ten years and has always focused on using the highest standards in data security and privacy policies. deCODEme is no different - we believe that genetic information is both personal and private. You will have total control over access to your deCODEme account and its information and you will also be the only one who decides who can view, compare or share your genetic information.

  2. Who owns the genetic data in my deCODEme account?

    3. As the account owner, you own your genetic data within the deCODEme account, therefore we do not keep the data locked from you in the deCODEme website. You are free to download all the analyzed genotypes from your deCODEme Genetic Scan. To ensure the security of the data once it is outside of the deCODEme website, the downloaded data is delivered to you in a password protected file.

  3. Since everyone chooses their own user names for their account, how can I be sure that the results posted to my account are truly mine, and not someone else´s?

    4. We ensure that no two individuals can use the same username. When our laboratory receives your buccal swab, the swab will be clearly marked and registered according to our specifications with your username and an associated barcode.

    deCODE has over 10 years of experience in processing and managing results of over 300.000 genetic samples and uses the same system to assign and keep track of anonymous but unique identifiers of DNA samples.

  4. Can I copyright my genetic data?

    5. Genetic data are not fit to become the subject of copyright. However, your genetic data is your property and deCODEme will not disseminate individuals´ data in any way without express request and approval. So for all practical purposes, your genetic data is exclusively yours in every aspect although not copyrighted.

  5. Where is my data stored?

    6. Your data is stored in our data storage systems at deCODE genetics in Reykjavik, Iceland. We have over 10 years of experience in securely storing and maintaining genetic research data on over 300.000 individuals in our deCODE systems. We will use our expertise to store your deCODEme account and its associated data in the same manner.

    The disk storage system and the computer servers used for deCODEme are kept in a special server room with strict access restrictions. Furthermore, access to the database software system that is used to analyze your data is only granted to dedicated database administrators.

    Database and system administrators must be able to access these systems, for instance to create backups. These employees will however never view individuals´ data in such a way that they could make sense out of it, for example to see any risk estimates or evaluated results. Such data is stored in raw form and only analyzed in real-time when you access your data from the deCODEme web-interface using your username and account password.

  6. Can I delete genetic information from my account?

    7. You can at any time choose to terminate your account and we will subsequently delete your data for you. To prevent accounts from being accidentally or maliciously removed, the termination request is executed 60 days after we receive your request. If you change your mind during this time period, you can always re-login to your account and re-activate it. If your account is not re-activated within the time frame specified above, your data will be deleted from all the operational systems at deCODEme.

  7. Can deCODEme, deCODE genetics, or any third party use the information in my deCODEme account?

    8. The genetic information in your account is yours and you control entirely who can view it or share it with you. Information that you provide about yourself under the security of your account and privacy of your chosen username may be used by deCODEme only to gather statistical aggregate information about the users of the deCODEme website. Such analysis may include information that we would like to be able to report back to you and other users of deCODEme, such as in counting the number of users grouped by gender or age, or associating genetic variants with any of the self-reported user attributes. In any such analyses and in presenting any such statistical information, deCODE will ensure that user identities are not exposed.

  8. Can deCODEme link my chosen account name or username to any personal identifier I have provided such as my address or e-mail provided in my billing information?

    9. deCODEme allows you to select your username at will, as long as it doesn't conflict with existing usernames of other people. This ensures that you can remain unidentifiable while ensuring that the system knows which sample belongs to which username. deCODEme accounts are unidentifiable, unless you decide to keep your name or other personal identifier in your settings.

    Emails, names or addresses, or other billing data cannot be used as identifiers within deCODEme. Indeed, many users may share the same email address, shipping/billing address, credit card etc. Thus, such information cannot be used to directly identify users and users can change email addresses once their account has been created.

    Email addresses, provided by users, are only used for the purposes of contacting users in relation to the services of the deCODEme website, for example for friend invitations or for the deCODEme newsletters. Under no circumstances will the email addresses be provided to 3rd parties.

  9. Can my insurance company get a copy of my deCODEme information?

    10. It is up to you whether you choose to share this information with your physician, your insurance company or any other third party. deCODE me will not share any individual information in deCODEme user accounts with insurance companies, physicians, nor any other third party.

    Note, that since deCODEme accounts are unidentifiable (unless you keep your name or other personal identifier in your settings), a third party has no proof that the information is yours.

  10. How do I terminate my account?

    11. Under your user settings you have the option to terminate your account. To prevent accounts from being accidentally or maliciously removed, the termination request is executed 60 days after you make the request. If you change your mind during this time period, you can always re-login to your account and reactivate it. If your account is not reactivated within the time frame specified above, your data will be deleted from all the operational systems at deCODEme.

Computer Settings

  1. Can I access my deCODEme account from any computer?

    2. Yes, you can access your deCODEme account from any computer, provided you have your account´s username and password. Some deCODEme pages contain disease-related information that is based on people's genetic profile. Users should keep this in mind when they access their data from an insecure client computer because some browsers may cache the content of these pages to the hard disk drive.

  2. How can I decide who else can see my genetic information?

    3. Your deCODEme account includes a feature called My Settings which allows you to determine who is able to share specifically defined parts of your information. You can for example make certain parts of your deCODEme information visible to all other deCODEme users, visible only to your defined friends, or fully private and visible only to you.

    Friends are created by sending invitations to existing users or by sending an e-mail to potential future users. In both cases, the individuals you send an invitiation have to accept the invitiation; in their invitation in-box (deCODEme users) or by following a link in the e-mail they receive. Friendships are reciprocal, that is if a user A is the friend of user B, then user B is also the friend of user A. Finally, existing friendships can be terminated at any time simply by removing users from the friends list in your account.

  3. Do I need to adjust my computer settings to protect the data in my account?

    4. Once you log into your secure myCODE page from the deCODEme home page, all data transfer between the deCODEme web server and your web client is encrypted using the HTTPS protocol.

    deCODEme uses public-key pairs, private key and a certificate, issued by Verisign. Your web browser should be configured to authenticate such certificates. In most cases this should not require any changes to your browser configuration. Security warnings in your web browser of choice should tell you if configuration changes are necessary.


If you have any question that are not answered to your satisfaction here, please contact us.



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