Genomed’s mission is to bring comprehensive genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. From day one, patients owning and controlling their genetic data has been one of our core principles. We work hard to ensure that patients are in control of what information they want to learn or share. Sharing genetic and other information that has been stripped of personal identifiers is a powerful tool for clinical medicine and science. We refer to this kind of information as de-identified information. It can help accelerate understanding of genetic conditions, improve genetic testing, speed development of new treatments, and advance research that may one day lead to cures for a variety of diseases.
We collect the information we need in order to provide a high-quality customer experience, including the information below.
Personal information, such as:
– Name
– Gender
– Date of birth
– Billing & shipping addresses
– Payment information (such as insurance ID or credit card numbers)
– Contact information (such as email address or phone number)
– Protected health information
Protected health information, such as:
> Personal information (mentioned above)
> Medical history (when provided)
> Laboratory results
> Insurance information
> Other health information provided by you or your healthcare provider
– Web behavior data, such as:
> Browser data
> Device information
> IP address
– Identifiable data
Identifiable data includes protected health information, such as information about your health status, any healthcare you have received, or payments for healthcare that can be linked back to you as an individual. This includes your test results, medical records, and payment history.
Our partner laboratory uses your identifiable data to produce genetic testing results and bill for our testing services. Please see the How we protect your information section below for details on how we keep your identifiable data secure.
Does you share identifiable data outside of the company?
Our partner laboratory will never sell or lease/rent your identifiable data to any third party (including academic researchers) without your explicit consent. This applies to all data listed above under What data does Genomed collect? (including your email address and phone number). Even with your consent, Our partner laboratory limits the sharing of identifiable data outside of the company as much as possible.
That said, there are a few specific instances in which we do we share information with others in order to provide you with our services, including:
– The healthcare provider who ordered your test, and in some cases his or her office staff
– Your insurance company to obtain payment for your test (if you choose to bill insurance)
– A company that processes billing claims and payments (and is contractually obligated to protect your privacy and security)
– Legal guardians or personal representatives (if applicable)
In addition, there may be special circumstances where we need to disclose identifiable data as permitted under the US Health Insurance Portability and Accountability Act (HIPAA), including:
– To ensure compliance with rules of government health programs such as Medicare or Medicaid
– In response to a court order, subpoena or other lawful process
– In connection with public health activities, such as reporting diseases to authorized public health authorities
– As otherwise required by applicable law
De-identified data is information that cannot be reasonably linked to a specific individual. HIPAA provides a safe harbor method for the de-identification of protected health information, which includes the removal of the following 18 identifiers:
– Name
– Specific geographical identifiers
– Dates (other than year) directly related to an individual
– Phone number
– Fax number
– Email address
– Social Security number
– Medical record number
– Health insurance numbers
– Account number
– Certificate/license number
– Vehicle identifiers and serial numbers (e.g., license plate numbers)
– Device identifiers and serial numbers
– URLs
– IP address
– Biometric identifiers, including finger, retinal and voice prints
– Full face photographic images and any comparable images
– Any other unique identifying number, characteristic, or code
Our partner laboratory removes all of the identifiers listed above and takes further precautions around genetic information by ensuring any information shared includes:
– No more than 4 common genetic variants
– No more than 6 rare genetic variants
– No unique, large family relationship data
Once all of these identifiers are removed and precautions are taken, we believe that the de-identified data cannot reasonably be traced to you or used to identify you or your genetic information as an individual.
We share de-identified data in specific ways that help advance medical care and the clinical practice of genetics. For example, we share de-identified data about genetic variants we observe with a few carefully selected public databases to advance the understanding of genetic information. One such database is ClinVar, a centralized resource managed by the National Center for Biotechnology Information (NCBI) and the National Institutes of Health (NIH) that enables genetic testing laboratories to improve the practice of medicine by uncovering links between specific genetic variants and disease. ClinVar submissions include in which gene the variant was seen, variant description, classification of the variant (positive, negative, or uncertain), and explanation for why the variant was classified as it was.
Subject to applicable law, we may also share de-identified data through research collaborations with universities, hospitals, other laboratories, or companies (that, for example, are developing a treatment for a disease). For example, if a university research group is studying patients with variants in a specific gene, we may provide a list of the variants we’ve seen. The list might include the patients’ age range (in decade), gender, variant name, and how we classified the variant (positive, negative, or uncertain).
Sharing de-identified genetic data is an essential component of the system by which laboratories assess and improve the quality of the genetic testing they provide. It can also significantly accelerate medical research for both individual patients and society as a whole.
In addition to patients owning and controlling their genetic data, Our partner laboratory also believes that genetic information is more valuable when shared. We encourage patients to choose to share their de-identified genetic variants with the medical and scientific community to help accelerate our understanding of genetic conditions, improve genetic testing, find new therapies, and eventually prevent disease.
Through sponsored testing programs, patients can elect to have a third party company (not their insurance company) pay for their testing at Our partner laboratory. In these programs, certain de-identified and other data are shared with program sponsors. Examples of information shared through these programs include the ordering clinician’s contact information, test ordered, variant name, and interpretation. No patient-identifiable information is shared with program sponsors unless there is a signed HIPAA authorization form between the patient and the sponsor.
Patients who choose to receive testing through sponsored testing programs or via a clinical trials may not opt out of sharing specific de-identified data, as defined by the program or trial. However, such patients can still set their data sharing preferences as described above; these preferences will apply to the sharing of data for purposes not related to the sponsored testing programs.
We may contact you about other Genomed products and services we believe may be of interest to you. To request that we only send you notifications about specific topics, please update your settings within your Genomed portal account.
Your contact preferences have no bearing on receiving your test results; you may not opt out of non-promotional messages regarding your account or service-related emails.
As a healthcare company, we and our partner laboratory are subject to and fully comply with the privacy and security requirements under HIPAA. We take great care to use technical, administrative and physical safeguards to secure your personal information and protect it against misuse, loss or alteration. Information that you provide through our websites is encrypted using industry-standard secure sockets layer (SSL) technology, with the exception of information you send via email. Your information is processed and stored on controlled servers with restricted access.
You play a vital role in protecting your information. Please refrain from emailing us any sensitive information. Please also be sure to choose a secure password when registering for a Genomed portal account and never reveal this password to any third-parties. Immediately notify us if you become aware of any unauthorized access to your account so we can disable it.
If you have any questions, concerns or complaints about Genomed’s privacy practices.