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
Consent Document - Key Points
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:
How do I take part in EDISON BIO Research?
- Take surveys or otherwise enter information about yourself into the EDISON BIO website or manually collected forms or questionnaires. You choose which surveys to take and which questions to answer.
Can my child take part in EDISON BIO Research?
- Your child may take part in EDISON BIO Research if they give assent to participate and a parent or legal guardian authorizes EDISON BIO to use their Genetic, Medical & Self-Reported Information for research.
Which of my personal information is used for research?
- Your genetic data, medical history and any other personal information you enter into the website, or forms, except for your Registration Information (name, contact information, and payment information), may be analyzed in the research.
- Your name and contact information may be used to communicate with you but are not analyzed in combination with your genetic, medical and other personal information.
Who gets to see my personal information?
- EDISON BIO's privacy statement outlines who does and does not get access to the personal information of EDISON BIO clients; here we list the additional individuals who will get access if you consent to take part in research.
- Within EDISON BIO: EDISON BIO researchers who conduct analyses will have access to your genetic, medical history and other personal information, but not to your name, contact, or payment information. EDISON BIO researchers who contact you will have access to names and contact information, but only to very limited genetic or other personal information.
- Outside of EDISON BIO: EDISON BIO may share some data with external research partners and in scientific publications. These data will be summarized across enough customers to minimize the chance that your personal information will be exposed. EDISON BIO may need to share the information with other agencies as required by law.
How will I benefit from this research?
- By taking surveys you may learn about EDISON BIO's research findings, including how your answers compare with those of others and new discoveries made by EDISON BIO's research program.
- Sometime in the future you or your family may benefit indirectly from research discoveries made by EDISON BIO or its research partners.
What are the risks of taking part in this research?
- There is a very small chance that someone with access to the research data or results could expose personal information about you. EDISON BIO has policies and practices in place to minimize the chance of such an event.
Can I stop taking part in EDISON BIO Research?
- Yes, you can withdraw from EDISON BIO Research at any time. Any of your data that have already been entered into a study cannot be withdrawn, but your data will not be included in studies that start more than 30 days after you withdraw (it may take up to 30 days to withdraw your information after you withdraw your consent).
Full Consent 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:
- Discover genetic, environmental and medical factors behind diseases and traits
- Uncover connections among diseases and traits
- Understand how people react to their personal health information
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:
- What you are agreeing to if you consent
- How you can participate
- How your data will be used
- How we protect your data and keep it private
- The benefits and risks of participation
- Your options and how to withdraw
- Who to contact if you have questions
1. What am I agreeing to if I consent?
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:
- Your genetic and medical history or bio sample data
- Information you enter into surveys, forms and other features labeled with the EDISON BIO Research
- Data you authorize us to import for research
- Your age, sex and ethnicity
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).
2. How do I participate?
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.
3. How will my data be used in EDISON BIO Research?
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.
4. How do you keep my data protected and private (whether or not I consent)?
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:
- The EDISON BIO researchers who conduct the statistical analyses do not have access to Registration Information (name, address, email address, user ID, password, or payment information) of customers
- EDISON BIO researchers who interact with research participants and conduct interviews have access to names and contact information of participants, but only to very limited genetic and other personal information
- To minimize the chance that an external person can determine that any particular customer is part of a study, EDISON BIO researchers either
- publish only data pooled across multiple customers or
- publish only very limited, non-identifying information of a single individual
- All EDISON BIO employees are trained on how to work with human research participants. In addition, all EDISON BIO researchers are trained on how to conduct research responsibly.
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.
5. What are the benefits and risks of participation?
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:
- Comparison of your personal survey responses to those of all responders, additional information about information, genetic research or the EDISON BIO study, and/or preliminary research findings
- There may be additional benefits to participation that are currently unforeseeable.
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.
- Some survey questions or data comparisons may make you or your family members uncomfortable.
- Your genetic data, medical results, medical history, survey responses, and/or personally identifying information may be stolen in the event of a security breach. In the event of such a breach, if your data are associated with your identity, they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage. In addition, if you or a family member has genetic data linked to your name or your family member's name in a public database, someone who has access to your EDISON BIO genetic data might be able to link that data to your name or your family member's name through the publicly available genetic data. Although EDISON BIO cannot provide a 100% guarantee that your data will be safe, EDISON BIO has strong policies and procedures in place to minimize the possibility of a breach.
- When EDISON BIO researchers publish results from this ongoing study, they may include your Genetic, Medical Information & Self-Reported Information but only as part of a summary across enough people to minimize the chance that your personal information will be exposed. Identification of your individual-level data from those summaries would be extremely difficult, but it is possible that a third party that has obtained some of your genetic data could compare that partial data to the published results and infer some of your other personal information.
- As with any online service, if you disclose your account password to others, they may be able to access your account and your Genetic & Self-Reported Information.
- There may be additional risks to participation that are currently unforeseeable.
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.
6. Do I have any alternatives? Can I withdraw from this study?
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.
- Transfer of ownership. If EDISON BIO undergoes a business transition such as an acquisition, financing or merger, the EDISON BIO Research study may be terminated. In such case, your information would remain subject to the promises made in any pre-existing Privacy Statement.
- Termination of service. EDISON BIO may terminate your access to the Service for any of the five reasons described in the Terms of Service. If your access to the Service is terminated for any of these reasons, your participation in the EDISON BIO Research study may also be terminated.
7. Who do I contact if I have questions?
If you have general questions and need help with EDISON BIO's service, please contact:
- EDISON BIO Client Care
- 1-832-691-7277 (9 AM-12 PM, 1-4 PM, Central Standard Time)
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:
- EDISON BIO Human Protections Administrator
- Email: support@EDISONBIO.com
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.