Frequently Asked Questions
- Q1. What is the purpose of this Initiative?The goal of this Initiative is to learn more about human health and disease to find better ways to keep people healthy and to help them when they are sick. We hope to collect health and genetic data from as many individuals as possible. The study will be valuable because it may help us to find new ways of identifying, treating and preventing diseases, such as diabetes and diseases of the heart and circulation.
- Q2. What is the expected duration of the participation and frequency of contact with estimated number of participants to be enrolled, types of data collection and methods? We will be contacting you if you are selected for free Genetic Information*. If you are not selected for free Genetic Information, we will be contacting you for participation in our research study/non-initiative enrolments, for which we will need to collect your Samples.
(* Please refer to the Section on “Eligibility/Selection Criteria: Free Genetic Information” for detailed terms & conditions with regards to eligibility/selection for rewarding free Genetic Information)
- Q3. What are we asking you to do? We would like you to share Personal Information by participating in this Initiative. We may invite you to consider having to donate Biospecimen Sample(s) if you are selected for free Genetic Information. If you are not selected for the free Genetic Information, we may invite you to participate in our research study/non-initiative enrolments.
- Q4. What will happen if you participate in the Initiative? If you participate in the Mission: Global Genome, then we may invite you to share your Personal Information. At a later date, if you are awarded free Genetic Information then you will need to give your permission (consent) by signing the “Informed Consent Form” and you may need to provide us with your Biospecimen Sample, which may include:
1. BloodLater, after collection of your Biospecimen Samples, we will store these Samples in a biobank, which is a safe, secure place for storing the Samples. We will use your Samples, DNA, Genetic Information, with other Personal Information for commercial and/or research studies that we approve- this might include studies that analyze your DNA. We may also request you to undergo a clinical examination and would request access to your medical information, which might include information on diseases you have, medicines you take, and results of medical tests you get.
3. Any other type of Biospecimen Samples
- Q5. Who will be able to access your Samples and medical information?
This Initiative is managed by experienced professionals and scientists who will ensure that your Biospecimen Samples and associated data is shared with any third party in a safe and secure manner. All the information will be de-identified so the third party does not know who you are.
It is possible that we may share some of your de-identified information with research workers in other hospitals, universities, research institutes, government agencies or companies. It is possible that the de-identified information will be sent outside GGC or India for use in a commercial or research study in another country. Any information shared in this way will be anonymised and will not be labelled with Personal Information such as your name and address to protect your privacy. However, we will not tell you every time your Samples and/or information are used for commercial and research purposes.
- Q6. What are the risks to you? We don’t foresee any major risks associated with your participation in this Initiative. At a later date, when you agree to provide your Biospecimen Samples, the physical risk of giving a blood sample are the same as those for any blood sample taken from a vein. You may feel faint, experience mild pain, bruising, irritation or redness at the site of puncture. In rare cases, an infection could develop.
- Q7. What are the benefits to you?The main benefit of being a part of this Initiative is helping us learn more about human health and disease. This will lead to better ways to treat disease and keep people healthy. However, your Biospecimen Sample(s), Personal Information provided and analysis may contribute to the creation of commercial products from which you will receive no financial benefit, nor will you have any rights, including ownership rights, to any results obtained from your Samples and/or information. If you agree to take part in this Initiative, your Samples and associated Personal Information could help to benefit those affected by various diseases, such as diabetes, diseases of the heart, genetic disorders, etc. Your Samples and associated Personal Information will be stored indefinitely and used for any commercial or research purposes. We may contact you in the future to get more information.
- Q8. Do you receive payment for participating in this study or for donating Samples? You may receive free Genetic Information, if you are selected as per criteria mentioned in the Website Standard Terms & Conditions. Apart from this, you will not receive any payment for participating in this Initiative or for donating your Samples. You will also not receive any treatment, nor any other compensation from any use or results obtained from your Samples and associated Personal Information.
- Q9. Does participating in this Initiative or being part of our research study cost you anything? There is no extra cost to you or your insurance company for participating in this Initiative.