Before you begin, it helps to have these nearby: Your insurance card Your child's date of birth and basic information Any prior medical records or test results, if you have them Don't have everything? That's okay — our team will help you gather what's needed.

 

Special Note for Louisiana Families:
We want to be as clear and helpful as possible before you begin. Jura Health is credentialed with Louisiana Medicaid. In Louisiana, Medicaid coverage is administered through individual Managed Care Organizations, or MCOs, and each MCO requires its own credentialing process.

Jura Health is NOT currently credentialed with Healthy Blue, Better Health, or HealthCare Connections. Unfortunately, we have seen a very long wait for orders covered by these plans. If you have one of these MCOs we recommend reaching out to your primary care provider to see if there is an alternative in-network testing provider.

We understand how disappointing that may feel when you are looking for answers. If you need help in finding a provider who if familiar with genetic testing options in NW Louisiana, please contact us directly. We are actively working to expand access and will update families as our Louisiana MCO credentialing changes.

Please read: Jura Health is currently only accepted by Colorado Medicaid in Colorado and by Healthy Horizons in Louisiana. We are not currently in-network with any private insurance companies, however we may be able to submit special out-of-network claims on your behalf. We do not accept Tricare, VA or Medicare coverage at this time. We do accept cash, FSA, and HSA payments.

If you have secondary insurance it's very important that we get this information. Also please confirm that you primary and secondary insurance are listed in the correct order. 

Genetic Counseling — Part of Your Testing Plan helps you understand the results of a whole genome test, providing clarity on what findings mean for your health and future medical decisions. A counselor can guide you through complex information, helping you assess risks, explore options, and make informed choices about your care.

Before testing: Your counselor gathers your family and medical history — what conditions run in your family, what symptoms your child has, what you've already been through. The more history the geneticist has going in, the more accurate and complete your results will be. This conversation directly shapes how your genome is analyzed. After testing: Your counselor walks you through what your results mean — in plain language — and helps you understand the next steps for your child and your family. Skipping the pre-test conversation means the geneticist is working with less information, which can lead to a less complete answer. That's why it's built into every testing plan. Note for Louisiana Medicaid Families: Before and after Genetic Counseling is required for all genetic testing.

You can choose to receive free secondary findings based on a gene list recommended by the American College of Medical Genetics and Genomics (ACMG). These findings reveal genetic variations linked to actionable diseases like cancers or heart conditions—conditions where early treatment or monitoring can reduce risk or detect issues sooner. Some may not appear until adulthood, while others can affect children. A result could diagnose a genetic condition before symptoms arise, though not all findings mean you will develop the disease, only that the risk may be higher. 

Give us some context so we can provide you with better care. Share what you know — there's no penalty for incomplete records.

Only upload documents related to why you're seeking genetic testing. You do not need to upload routine labs, vaccination records, or general visit notes.

Helpful examples: previous genetic test results, referral letters from a specialist, neurology or developmental pediatrics clinic notes, or reports from prior evaluations related to your child's diagnosis.

We typically recommend a standard saliva kit. However, if the patient is under 2 years of age or has coordination or sensory issues that would make spitting into a tube difficult we recommend using the saliva swab.

Your provider is your partner in this process. Please provide as much contact information about your HCP - typically a doctor, nurse practitioner, or other specialist. Since whole genome sequencing is a clinical test, your healthcare provider needs to be part of your care team. They'll receive your results alongside you and help determine next steps. Our team will reach out to them directly — you don't need to coordinate this yourself. However, if you haven't already, it is helpful to talk to your doctor in advance about your desire for genetic testing so they know to expect our request.

This informed consent document provides you with information about the test ordered, the potential outcomes of the test, the results that will and will not be returned to you, and the ways your data from this test may be used. For the purposes of this document, the words “you”, “I” and “me” will refer to the person providing consent for themselves or on behalf of a child and/or another individual as the legal guardian. Given the complexity of this test, it is recommended that this document be reviewed with you by a qualified professional, such as a physician, genetic counselor, or research study coordinator. You should also be provided a copy of this document to keep for your records.

Your ordering clinician will receive the final report from this test. You may also request a copy of the report if one is not provided to you. Jura Health can also provide you with your raw DNA sequencing data upon request, however it should be noted that this data is large and not readily interpretable.

Summary of the Test
A gene is a segment of your DNA sequence that has a certain function that, when disrupted, may be associated with a specific disease or condition. Genetic testing analyzes your DNA sequence and looks for these disruptions. The test offered here is whole genome sequencing (WGS). In WGS the laboratory analyzes your entire DNA profile which is then examined based on the indication(s) for testing that you established with your doctor/healthcare professional to find a genetic explanation for your symptoms or features.

Sample Collection
Your DNA can be found in almost every cell in your body. For our genetic test, you will be asked to provide a small blood or saliva sample. The laboratory will use this to extract the DNA to be analyzed.

Test Outcomes and Return of Results
There are three main outcomes that can result from genetic testing.

●     Positive result: The test found a change or changes in your DNA that are known to cause disease. The result may explain symptoms you already have or tell you about risks for developing a disease in the future. The result may or may not change treatment and management recommendations given by your doctor.

●     Negative Result: No changes in your DNA that are known to cause disease were identified by this test. This result does not remove all risk of developing a disease in the future, and does not tell you about genetic changes that are not covered by this test.

●     Uncertain Result: A change in your DNA was found, but there is not enough information available to determine whether or not that change could cause a disease. This type of genetic change is called a “Variant of Unknown Significance" (VUS). Some VUS may later be found to be disease-associated (pathogenic); but many VUS are ultimately shown to not cause disease. Your physician and our laboratory can help monitor your VUS over time. Since our test focuses on actionable results, typically an uncertain result will not be returned to you unless told otherwise.

It is important to understand that the results of your test are based on the information available at the time of reporting. It is possible that this information can change over time based on available clinical genetic research and advancements in testing.

Primary Findings
Diagnostic testing is used for people who have symptoms of a genetic disease or condition, to test for changes in a set of genes that are already known to be associated with your symptoms.

Whole Genome Sequencing: This test analyzes your entire DNA to find a genetic explanation for your symptoms or features. As stated in the previous section, sometimes a clear answer may be found such as a pathogenic variant in a gene that fully explains your symptoms. Other times, the results may be uncertain, either because the variant is of unknown significance (VUS) or because the gene in which the variant is found is not a specific match for your symptoms. This test will not report changes in your DNA that are not related to the indications for testing in you/your family. For genetic conditions that are inherited in a recessive pattern, meaning copies of the gene from both parents need to have damaging changes to cause a disease, a single damaging change in a recessive gene may be reported to you, even if a second variant has not been identified. This is because the test may have missed the second variant.

However, it is also possible that the single variant is unrelated to your symptoms and you are a carrier of this condition. If a set of genes is analyzed, there may be large variants that affect genes in the set as well as genes outside of the set. In this case, the entire variant will be reviewed and reported. This test may not be able to report any changes in your DNA in regions of DNA that are not well understood (such as regions deep in non-coding sequences), in regions that cannot be analyzed due to technical limitations of the test (such as repeats), or in genes that have not yet been associated with a disease or condition. The analysis is based on the current knowledge available at the time of reporting and it is possible that knowledge will change over time.

Secondary Findings: opt-in
Unless otherwise stated, you have the option of having secondary findings returned to you based on a gene list recommended by the American College of Medical Genetics and Genomics (ACMG). Secondary findings are variations in a group of genes that are considered actionable diseases. Actionable means that if you know you are at risk for these diseases, there are actions you can take to mitigate your risk including treatments or surveillance to detect disease early. Some of these conditions may not present until adulthood, while others may impact children. A result from this test could diagnose you with a genetic condition before you are aware of any symptoms. Some results may not guarantee that you will develop that disease in the future, but your risk could be higher than the general population.

You have the choice as to whether you want to receive information about these secondary findings. Learning this information is a personal preference that some might find helpful, others might not. 

Incidental Findings
Incidental findings will not be returned in this test. That means that you could have a damaging change in your DNA that is associated with genetic disease but is not reported to you, often because the variants analyzed are outside of the indication for testing. A finding is considered incidental if it is not directly related to the reason for your test or outside of the secondary findings listed above.

Test Limitations
This test may have limitations due to the current knowledge and technologies available at the time of testing. This test may not detect complex structural changes in your DNA, repeat expansions, or large chromosomal events like aneuploidy (an abnormality in the number of chromosomes in a cell due to loss or duplication). The testing technology may also be limited in its ability to find genetic changes in highly repetitive or homologous (pairs of chromosomes that have similar genes, although not necessarily identical) regions of the genome. A negative result cannot entirely rule out your risk for a disease due to these limitations.

Reinterpretation and Reanalysis
You may receive an updated report in the future. This could happen if there is a change in how a genetic change (a variant) on your report is classified. You and/or your ordering clinician can also request that your genetic data be reanalyzed. There may be a cost associated with a reanalysis. You are encouraged to talk to a doctor about the potential impact of reanalysis on your care.

Other Uses of My Data
Your de-identified data and/or sample may be used for future test development/improvement, test validation, as well as laboratory quality control and regulatory compliance purposes.

Potential Risks of Genetic Testing
Psychological risks: Genetic testing is always a personal choice. People may have different reactions and feelings about genetic testing and its results. Some people may have concerns leading up to and after receiving genetic test results. While some may have negative feelings about their genetic test result, others may have a positive, empowering experience.

Unanticipated relationships: Testing can uncover information previously unknown to you or your family such as non-paternity/non-maternity (an individual is not your biological parent), undisclosed adoption, or relatedness of parents. This information may be disclosed to the clinician who ordered the test if it is associated with the interpretation of your genetic results or your care.

Potential for errors: Genome sequencing is not 100% error free. Genome sequencing may not identify all genetic diagnoses or risks and cannot rule out other long-term medical risks. Technical limitations

include, but are not limited to, the inability to analyze or interpret certain regions of DNA. While strong measures are in place to avoid it, potential errors may also be caused by mislabeled samples, contamination, sequencing or other technical errors, inaccurate reporting of family relationships, incomplete descriptions of clinical symptoms or features, or other reasons.

Physical risks: If you are providing a blood sample for testing, some people can feel mild discomfort and/or bruising, dizziness, lightheadedness, or may faint. Other complications from a blood draw can include infection or excessive bleeding, but these risks are very low.

Risks to data security and privacy: The laboratory protects your personal information by following local and federal requirements to secure and protect your information. Although the risks are low, there is always a chance of a failure in data security or that de-identified information could become identifiable in the future.

Genetic discrimination: The federal Genetic Information Non-Discrimination Act (GINA) provides protection against workplace and health insurance discrimination. This means that employers with greater than 15 employees cannot make employment decisions based on your genetic information, and health insurance companies cannot make coverage decisions based on your genetic information. GINA does not apply to other types of insurance, such as life insurance or disability insurance. The law also does not apply to individuals receiving their insurance through the federal government or the military. In addition to GINA, there may be state laws that provide additional protection against genetic discrimination. Additional information about GINA can be found at:
https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination.

Data Storage and Retention
It is best practice for the laboratory to hold on to your sample for a minimum of 7 years after your test is complete. The data used in your test, your health information, test order and report, will be retained per state and regulatory requirements, unless otherwise noted. Keeping this information accessible means that the laboratory may be able to update your report in the future if new information becomes available. In addition, de-identified samples and data may be used for internal quality control, continuous improvement, test development, and validations.

Access to Genetic Counseling
Genetic counseling is recommended as it can help you understand genetic testing and your results. If you do not have a genetic counselor, access can be arranged through Jura Health or your doctor. You can also find a genetic counselor on your own through the National Society of Genetic Counselors: https://findageneticcounselor.nsgc.org/

Privacy and Confidentiality
Your doctor may share health information with Jura Health to help interpret your results. This is in addition to identifiable information, such as your name or date of birth, that is included on your sample, the test order, and your test report. The laboratory will only release your test report to you, your ordering clinician or other clinicians included on your test order, or to others with your consent (contact us at patientcare@jura.health) or as required by law. The results of your genetic test are part of your health record, just like other medical tests. By consenting you understand that the clinician (e.g. genetic counselor or laboratory / Jura staff) may utilize available tools that can search, find, and aggregate your patient history of care, to help provide you with the highest level of care. These tools are used, and the data is managed, in compliance with HIPAA best practices.

Test Cost
Genetic testing may incur a cost to you. Please contact your ordering clinician for further details. Some results from genetic testing may require additional screenings, treatment, or medical visits that incur additional costs. These costs may depend on health insurance coverage and/or your health care system.

Consent Withdrawal
Your consent to testing is voluntary and should only be requested if you feel informed to make this decision of your own free will. By signing this form, you are stating that you understand the test that will be performed and have had an opportunity to talk to your healthcare provider for clarification if needed. You can withdraw your consent at any time if you no longer want to have genetic testing and/or if you want to remove access to your sample, data, and results as described above. If you would like to withdraw your consent, contact your ordering clinician.