EDISON BIO aims to make and support scientific discoveries and publish those discoveries in scientific journals. We invite you to take part in this project, which we call
EDISON BIO aims to make and support scientific discoveries and publish those discoveries in scientific journals. We invite you to take part in this project, which we call EDISON BIO Research. To get started you must agree to the terms in our full consent document (below). Here are key points of that document:
One of EDISON BIO’s missions is to make and support meaningful scientific discoveries by enabling its customers to participate directly in research. EDISON BIO will enroll many participants from among its clients in this project, which we call EDISON BIO Research. Specifically, EDISON BIO Research refers to research aimed at publication in peer-reviewed journals and research funded by the federal government and educational institutions. The EDISON BIO Research study, which will yield scientific articles, aimed to:
For further details on EDISON BIO’s other uses of personal information, see our Privacy Statement.
EDISON BIO seeks your voluntary participation in EDISON BIO Research.
This document explains:
Giving consent by checking the appropriate box below means that you agree to let EDISON BIO researchers use your Genetic, Medical & Self-Reported Information for EDISON BIO Research, as described above. “Genetic, Medical & Self-Reported Information” refers to:
Self-Reported Information includes any information you submitted prior to giving consent. If you have elected to have your sample stored, we may also use the results of further analysis of your sample in EDISON BIO Research. Your Genetic, Medical & Self-Reported Information does not include identifying Registration Information you provided when you purchased or created an account (such as name, address, email address, user ID, password, or payment information).
Participation consists of (1) allowing EDISON BIO researchers to use your Genetic, Medical & Self-Reported Information for EDISON BIO Research, and (2) entering data about yourself into EDISON BIO Research features on the EDISON BIO website and questionnaires. These features include surveys, individual questions, and other features where you enter information. If you do not feel comfortable providing a piece of information, you may choose not to answer that question. You may choose to take all, some, or none of the surveys.
The EDISON BIO Research study is open-ended: new surveys and features may be added on a continuing basis. If new surveys or features are added, we may invite you to complete these activities. We may also invite you to participate in a specific study if your Genetic, Medical & Self-Reported Information matches the area of interest. Such invitations will be sent using routine communication methods, such as email, push notifications, phone call or announcements when you sign in to your account.
For your participation, monetary, cash equivalents such as gift certificates or discounts on future EDISON BIO service purchases, or charitable donations (up to a value of $30 per half hour of expected time) may be provided as compensation for your time.
Your participation in the EDISON BIO Research study is completely voluntary.
Your Genetic, Medical & Self-Reported Information may be used to discover links between genetic markers, non-genetic markers, traits, diseases, behaviors and other characteristics; and population history; or to assess how people respond to personal genetic and medical information. Discoveries made as a result of this research could be used to understand the basic causes of disease, develop drugs or other treatments and/or preventive measures, or predict a person’s risk of disease. The topics to be studied span a wide range of traits and conditions, from common to rare. The topics include simple traits such as hair color or freckles, serious diseases such as Parkinson’s disease or diabetes, and less serious conditions such as migraine headaches or response to over-the-counter drugs. Some of these studies may be sponsored by or conducted on behalf of third parties, such as non-profit foundations, academic institutions or pharmaceutical companies. This study may cover potentially sensitive topics such as sexual orientation, illicit drug use or other illegal behavior, or HIV/AIDS status.
EDISON BIO’s Privacy Statement outlines how the company protects your privacy while conducting business, such as providing our services to you. EDISON BIO uses a range of physical, technical, and administrative procedures to protect the privacy of your personal information, including your genetic data and your survey responses.
If you agree to this Consent Document, EDISON BIO can use your information in additional ways. Specifically, EDISON BIO researchers can use your data for research that will be published in scientific journals, or that is sponsored by public or private organizations.
Just as EDISON BIO aims to minimize the chances of a privacy breach while conducting its business, EDISON BIO researchers aim to minimize the chances of a privacy breach while conducting research. Here are the main ways we do that:
In some cases, if an external party demands access to customer data, EDISON BIO can exclude from release the data of customers who have consented to research.
The privacy measures cannot be used to resist a demand for information from personnel of the United States Government that is to be used for auditing or evaluation of federally funded projects or for information that must be disclosed in order to meet the requirements for the Institutional Review Board (IRB). The IRB have the right to audit this study’s data, including information that identifies you.
One of EDISON BIO’s missions is to make meaningful scientific contributions by enabling its customers to participate directly in genetic research. If EDISON BIO publishes study results in peer-reviewed journals, there may be an indirect benefit to you as scientific knowledge increases and/or new drugs or tests are developed.
You may also have the opportunity to acquire one or more of the following, in return for some level of participation in the research:
Based on the results of this study, EDISON BIO may develop intellectual property, including but not limited to patents, copyrights and trademarks, and/or EDISON BIO may commercialize products or services, directly or indirectly. In such cases you will not receive any compensation.
There are some potential risks to participating in the EDISON BIO Research study, as described below.
None of the surveys or other procedures used by the researchers in the EDISON BIO Research study is invasive or experimental. The procedures involved do not involve more than the minimal risks described above.
Your alternative is not to participate in the EDISON BIO Research study. If you choose not to give consent for EDISON BIO Research, your Genetic & Self-Reported Information may still be used for other purposes, as described in our Privacy Statement. If you do give consent to participate in this study, you may choose not to take EDISON BIO Research surveys or use other EDISON BIO Research features.
At any time, you may choose to change your consent status to either take part in EDISON BIO Research or to withdraw all or some of your Genetic & Self-Reported Information from EDISON BIO Research. Your consent status is located in the EDISON BIO “Settings” page (if you experience problems changing your consent status, write to the Human Protections Administrator at support@EDISONBIO.com). If you withdraw all or some of your Genetic, Medical Information & Self-Reported Information, EDISON BIO will prevent that information from being used in new EDISON BIO Research initiated after 30 days from receipt of your request (it may take up to 30 days to withdraw your information after you withdraw your consent). Any research on your data that has been performed or published prior to this date will not be reversed, undone, or withdrawn.
Choosing not to give consent or withdrawing from EDISON BIO Research will not affect your access to your Information.
You may also discontinue participation by closing your EDISON BIO account, as described in the Terms of Service. Requests for account closure can be made directly to our client care team.
In addition, the EDISON BIO Research study may be terminated without your consent. In the following cases, EDISON BIO will maintain your Genetic, Medical information & Self-Reported Information according to the terms of our Privacy Statement.
If you have general questions and need help with EDISON BIO’s service, please contact:
If you have any questions or concerns about the EDISON BIO Research study, if you suffer a research-related injury, or if you have a question about subjects’ rights, please contact the following:
If you have any questions or concerns about research that you do not wish to discuss with EDISON BIO, please contact the IRB for the independent, impartial research review board for this study.