Privacy & Data Protection
- Will my results impact my health insurance?
- How will my information be used?
- How do you protect my privacy and confidentiality?
- Will my results of my participation in the study impact my employment?
- Will my results of my participation in the study impact my life insurance, disability insurance, or long-term care insurance?
- What measures does Helix take to keep research study data safe?
- Who do I contact for help?
Will my results impact my health insurance?
No. The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that makes it illegal for health insurance companies, group health plans, and most employers to discriminate against you based on your genetic information. However, this law doesn’t protect you against genetic discrimination by companies when they consider selling you life insurance, disability insurance, or long-term care insurance. These companies must still abide by GINA when it comes to health insurance.
How will my information be used?
The information you contribute to The Helix Research Network will be used by researchers to study a wide range of questions, including learning more about myocarditis, around how DNA can impact health. The databases created in this research program will be used for future research by Helix and by other members of the Helix Research Network. That means, by agreeing to participate in the study, you are agreeing to have your information included in future research projects that are approved by Helix.
Researchers outside of the Helix Research Network may also study your coded information and samples but will not have access to information that directly identifies you. These researchers may work for health systems, universities, government agencies, companies like life sciences companies and other foundations or groups interested in research. Any sharing of information outside of the network will be carefully reviewed and approved to make sure it is ethical, secure and protects your privacy.
We may share discoveries that are made by Helix researchers through our website and newsletters.
How do you protect my privacy and confidentiality?
Your privacy is very important to us, and we take many steps to ensure it is protected, such as:
- Your information (your genetic information and health records) will be stored in secure databases.
- We limit and closely monitor who can access your data.
- We limit who is allowed to see information that could identify you, like your name or contact information.
- Researchers who have access to your data must be trained and certified to work with this type of research data.
- You can choose to withdraw and stop sharing your information at any time.
Will my results of my participation in the study impact my employment?
With few exceptions, GINA prohibits employers from discriminating against their employees on the basis of genetic information in any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment. The law similarly prohibits labor organizations from excluding, expelling, or otherwise discriminating against an individual based on genetic information.
Importantly, GINA’s employment protections do not extend to all employees or in all circumstances. Most notably, these protections do not apply to employees at companies with fewer than 15 employees or to active members of the U.S. military.
Will my results of my participation in the study impact my life insurance, disability insurance, or long-term care insurance?
Currently, federal and state law protections against discrimination based on genetic information by health insurers do not extend to providers of life, disability, and long-term care insurance. That means companies offering these kinds of insurance may request access to genetic information in your medical record as part of the insurance application process (including information generated as part of your participation in this study) and may legally consider this information in deciding whether to extend your coverage or in determining the price they charge you.
If you already have an existing life insurance, disability insurance, or long-term care insurance policy, new information about your health (including genetic information) generally may not be used to deny you continuing coverage under those policies. However, the terms of individual policies vary significantly and you should read your policy carefully to understand how results could impact your coverage or insurance rates.
What measures does Helix take to keep research study data safe?
If you decide to participate in the The Helix Research Network study, your information will be stored in databases that are maintained and monitored by a team of IT and security professionals who are committed to safeguarding the information stored in those systems. These systems include numerous technical, physical and administrative safeguards that meet, and in some cases exceed, industry best privacy and cybersecurity practices, including standards established by the National Institutes of Science and Technology (“NIST”), the Association of International Certified Professional Accountants (“AICPA”), and applicable state and federal laws, such as HIPAA. Some of the technical safeguards we’ve implemented include rigorous identification, authorization and access controls, audit and logging procedures, configuration management, system and communication protections and endpoint monitoring, data loss prevention systems, encryption of data at rest and in transit, and vendor risk management procedures. Although we generally do not share the details of how these controls and safeguards have been configured, we can share that our privacy and security programs are reviewed annually by third party auditors to ensure our safeguards are operating as expected and in a manner consistent with industry standards.
Who do I contact for help?
For questions related to the informed consent process and using the informed consent website (including updates to email and phone number), and for questions related to the shipment of a sample collection kit, or creating or accessing an optional Helix account, please contact Helix customer support by phone, email or by filling out an online request: (844) 430-0468 // firstname.lastname@example.org // Submit online form here.