Our aim is to connect users and institutions to facilitate direct participation to research studies. We use a “dynamic” consent model, which means that we will ask your authorisation for any study an institution might want to conduct using your data. Under no circumstances will we release your data to a third-party you have not validated or for other purposes than the ones you consented to.
The only information we keep about you is what you choose to give us. By uploading your genetic data, you consent to heterogeneous holding your genetic information. We also store information you give us about preferences, family history or medical history. We make sure this data is encrypted, so that no one can access it without your authorisation. We do not conduct any studies or use your data in any way without asking you first. This is true for institutions that use our service or for any research we do ourselves. We always ask your consent before sharing your information with a third-party. Any information you disclose will not be shared to another third-party without your permission. For example, you might want to tell us about your preference for sweet vs salty snacks but prefer not to share this information with specific third-parties. We respect that and make sure we ask you each time which information you want to share and with who. We use third-party cookies to help us recognise you and know more about your preferences and demographics. This include your internet protocol (IP) address, unique identification numbers associated with device, browser type, internet service provider, date/time stamps, clickstream data, referring/exit pages and operating system. We do not communicate these data to 3rd parties. To opt out of Google Analytics advertising features, please use Google Ad Settings. We may use your genotype data when looking for suitable participants for research and contact you if you match our criteria. Please note that we do not share this information with our third-parties unless you consent to participate and that you can opt out of this service at any time.
We believe you should have control of who your information is shared with, and under what circumstances. We do not share your genetic data or any of your personal information with any third-party without explicitly asking for your authorisation. When we do so, we always state which institution your data will be shared with and for what purposes. You choose whether or not you want to participate and what information you want to disclose.
We encrypt your data to make sure that only the third-parties you agreed to can access it. We also make sure that your identity is protected. We might use filters such as age, gender or ethnicity to recruit for specific studies - in some cases, third-party will have broad information about your age range, ancestry and/or gender. They will not however have access to any unique identifier such as your name, social security number or IP address. The information we give to third-party is always pooled from several users and any feedback/message you receive pass through our platform.
You can close your account at any point - we will delete any information we hold about you, which means you will be entirely removed from our database. Institutions you shared your data with when participating to studies may still have access to your genetic information.
Before you choose to participate in a study, the third party conducting the study will communicate the study’s purpose, and what information about you they want to access. We only give your data to a third-party if you agree to participate. We use “dynamic” consent, which means we will ask your permission for each study you decide to participate into. We will therefore not share your information with any third-party you did not explicitly agreed to share your data with, nor will we share any information we hold about you that you do not agree to share with that third-party. Once you do consent, you agree to your data being held by the third-party of your choice and to be used for further analysis. You also agree to the results of the study being published. These results may include insights gained from your genetic information, although your anonymity is protected at all time.
As good practice, we ask from institutions that work with us to use your data for the purpose communicated to you only. We cannot guarantee that they will abide by our standards. We ask you to only share your data with companies or institutions you feel comfortable with. We protect your anonymity and ask our third-party to communicate clearly about the purpose of their research but we cannot be responsible for how they use the data subsequently.
There is a risk that someone with access to the research data could expose your personal information. We take great care in making sure that this risk is minimised by encrypting and anonymizing your data. We take your privacy seriously and use security standards that makes it difficult for any third-party to link your genotype or personal information to your unique identity.
You can close your account or remove your data from our site at any time. Data that has already been entered in a study can however not be withdrawn unless agreed as part of the consent to participate in the study. We will contact our third-parties to ask them to not include your data if you request it but we cannot guarantee that they will.
We seek to give back relevant information to our research participants. We understand that one of the biggest incentives in participating is to learn more about yourself and your family. We create a curated report for each study you participate in which explains to you in plain terms what the study has found and where you fit in and seek to be transparent about the way your data was used and what impact it had in the study. We do not give any kind of medical advice. It is important to keep in mind that although scientists try their best to be accurate, studies can be flawed or inconclusive. We ask you not to seek treatment or prevention as a result of information gained from participating in a study. The results are communicated to you to keep you informed about research progresses and to show you how your data is used. Should you have any concern, please talk to your doctor. Only she/he is in a position to recommend prevention/treatment plans suited to your specific genotype and medical history. Before showing you a report, we always ask for your consent. We describe precisely what the study investigated and the conclusions that you may stumble upon. You have a choice not to see the report at all or to only see the general findings with no reference to your specific genotype.
Knowledge is irreversible: You should not assume that the information gained through our explore features or from participating in studies will always be welcome or positive. To avoid exposing you to information you may not want to have, we aim to ask your consent before delivering specific features or research findings. We ask you to consider those seriously before you decide to consult them. . Some information may evoke strong emotions and some could even have legal or social implications (e.g. discovering you are related to someone you did not suspect, discovering you are not related to someone you thought you were related to, finding out about increased risks for a specific disease). Research is not perfect. Laboratory errors can happen. Although we do not process your genome sequence data ourselves, it is possible that part of the data given to you by your genetic sequencing provider contains errors. In addition, it is possible that research findings communicated to you are not replicated by other studies in the future or shown to contain errors. We do not take responsibility for the quality of research conducted by our third-parties. We share results that we think may be relevant to you but we ask you to remember that there is a large amount of uncertainty with most research studies, particularly in the early stages. We do not provide medical advice and advise you not to change your health behavior solely on the basis of information provided from our explore features or research reports. Please discuss any concerns you may have in regards to your genetic information with your doctor or healthcare provider before taking any action - they will be able to advise you taking into account the wider context of your health and medical history. Please note that most common diseases are caused by multiple genetic and non-genetic risk factors. Any decisions made by you based on information gained through this service is entirely at your own risk. No genetic association does not mean no risk. Please do not assume that if your genotype is not shown to be associated with a specific disease, you have no risk of being affected. In addition, we are still far from understanding all the genes involved in most disorders, which means a causative gene might exist that we still do not know about. Sharing your genetic information could be used against your interest. Although very few companies currently request genetic information, this could change in the future. Genetic information you share with your healthcare provider may become part of your medical record and be shared with other healthcare providers in the future. Information shared with family, friends or employers could be used against you as we learn more from genetics in the future. Although most insurance companies do not currently ask for genetic information, you should be aware that if asked about whether you have learnt genetic information about health conditions and you do not disclose this information, this may be considered to be fraud. Any information provided by heteroGENEous is for research and educational purposes only. The findings reported from studies have not been clinically validated and the technology used by most third-parties that contract with us is that used by most research institutions and has not been widely approved for clinical use. Our service is not meant to be used for any diagnostic purpose and cannot substitute medical advice. Always talk to your physician about your particular plans of prevention/treatment and do not rely on data provided by Heterogeneous to make health-related or life-related decisions. Heterogeneous does not promise or endorse the effectiveness of any treatment, prevention, test, drug, medicine, medical device or any other product, services or procedures. Any information communicated to you is for informational or educational purposes only and for discussion with your doctor or healthcare provider.
By accessing heteroGENEous services, you agree to and promise the following: