JPatible Program Services Agreement
This Services Agreement (hereinafter “Agreement”) describes the JPatible compatibility counseling program (“Program”). Please read the following in its entirety and indicate your acceptance by clicking the [“I ACCEPT/AGREE” BUTTON OR “I ACCEPT/AGREE” HYPERTEXT LINK] at the bottom of this page (“Acceptance”). Acceptance of this Agreement means that you agree to be bound by the terms and conditions set forth herein.
The JPatible Program
JPatible wants to help you in your journey to marriage and family. We know that you have many questions when seeking your bashert (destined one) and in starting a family together. We believe one of those questions should be whether you and your potential spouse or partner have in common any genetic mutations that would put your future children at-risk for having a genetic disorder. Having this information allows you and your prospective spouse/partner to explore your options and reduce the risk of having a child with a serious, potentially fatal medical condition.
JScreen Genetic Counseling and Genetic Testing
JPatible does not itself provide genetic testing or genetic counseling and does not provide healthcare services. We facilitate your access to genetic testing and genetic counseling services through our partnership with JScreen, a genetic carrier screening program within Emory University School of Medicine’s Department of Human Genetics (the “JScreen Program” or “JScreen”). JScreen is a not-for-profit at-home education and carrier screening program that engages a third party laboratory. JScreen’s test panel designed for JPatible is comprised of more than 200 autosomal recessive genetic diseases, some of which occur more frequently in the Jewish population (Ashkenazi, Sephardic and Mizrahi), and some of which are common in the general population or other ethnic groups. JScreen will coordinate genetic testing through third party laboratories. JScreen will coordinate genetic counseling services through third parties and through JScreen. JScreen’s genetic counselors or contracted genetic counselors will be able to answer questions you may have about the meaning of your test results.
A complete list of diseases on the JScreen test panel can be found at www.JPatible.com. Talking to a JScreen genetic counselor can help you understand your genetic risk factors and potential options to consider in starting a family.
The decision about whether to get genetic testing is voluntary, and you should make sure that JScreen answers any questions you have about the risks and benefits of testing before you sign the JScreen informed consent document.
The test kit will be sent directly to you from JScreen, and you will return your specimen directly to JScreen’s participating laboratory. Once the participating laboratory completes the testing, results will be sent directly to JScreen. All genetic counseling explaining your specific results will be provided to you by JScreen.
Accepting this Services Agreement starts the process for you to access JScreen’s genetic testing panel designed for JPatible and JScreen’s genetic counseling, as well as JPatible’s separate compatibility counseling program. By accepting this Agreement, you will be authorizing JPatible to receive the results of your genetic testing from JScreen for use in the JPatible compatibility counseling program, and to share them with JPatible’s compatibility counselors and any other JPatible staff necessary to provide such compatibility counseling services to you. JPatible will maintain and handle information about you in a secure, legally compliant manner. JPatible will not disclose your information to any third party without your prior written consent.
Once you accept this Agreement, you will be able to log-in and register on JPatible’s web portal you will also be linked to JScreen’s web-based platform to review and sign the JScreen required documents and then order a saliva test, start the testing process. JScreen will send you the information and materials necessary to collect your saliva sample at home and send it back to the participating third party laboratory.
JPatible’s Couple Compatibility Counseling Services
The results of JScreen’s third party testing may reveal that you are a “carrier” of a mutation(s) for one or more autosomal recessive genetic diseases. If you and your spouse/partner are both carriers for the same genetic disease, the two of you are at increased risk of having a child with that genetic disease.
JPatible will use the genetic test reports received from JScreen to advise you and your spouse or potential spouse on the risk that you as a couple has for having children with genetic diseases.
The JPatible program does not provide medical advice or treat any type of medical condition, and should not be used by you or your partner in place of consultation with a qualified medical practitioner/healthcare provider. If you have a personal medical history or family history that you are concerned about, please include this information in your JScreen registration and also discuss these concerns directly with your healthcare provider.
Secondary Use of De-identified Data
Your information may be included in aggregate data that is used for research and record keeping purposes, but only once it has been “de-identified.” “De-identified” means that any personal information that could be used to identify your test results has been removed. The information used for research purposes may include, but is not limited to, demographics, the total number of participants screened, the total number of participants identified as positive carriers, information about known or newly identified genetic mutations, and the total number of participants referred to and completing genetic testing and counseling. JPatible may publish statistical information about the program that includes this de-identified aggregate data. None of the information released by JPatible will identify you in any manner. It is possible that JPatible and JScreen will coordinate de-identified data for the purpose of statistical analysis and research.
It is your sole responsibility to read the JScreen informed consent and related documents. By accepting this Agreement, you agree that JPatible is not responsible for any harm or damages that you may experience as a result of any errors or omissions in the provision of genetic testing and counseling services to the extent that such services are not provided by JPatible.
Also, although carrier screening can reduce the incidence of certain genetic diseases, it cannot guarantee you a healthy child. JScreen tests for a limited number of diseases and conditions that may manifest in childhood or adulthood and may be associated with significant morbidity and mortality. The JScreen panel created for JPatible participants tests only for recessive genetic carrier states where each partner contributes a gene that can put a child at-risk. The panel created by JScreen for JPatible participants does not test for X-linked disorders or autosomal dominant disorders. JPatible services are limited to advising participating couples about whether they carry the same condition which could put their offspring at-risk for developing those diseases. By signing this agreement, you recognize that not all genetic diseases are tested for by JScreen’s test panel designed for JPatible, and that testing can only provide information for diseases that are tested for. JPatible’s couple compatibility program services can reduce, but cannot eliminate, the risk that your children are born with a genetic disease. There remains the possibility that you or your spouse or potential spouse may be a carrier for disease not included in the test panel, or have a mutation that is not detected in a gene that is included on the panel, which limits the ability of JPatible’s couple compatibility counseling to fully advise you of the potential risks. You also agree that there is a small chance that an error can occur in the laboratory testing despite the fact that the participating laboratory uses a high level of quality control measures. While these are rare possibilities, both can limit the effectiveness of the couple compatibility counseling services.
It is extremely important to stay informed about updates in screening test scope and efficacy before each pregnancy. It is strongly advised that you share your results with your obstetrician prior to each potential pregnancy in the event that changes may lead to the need for further testing.
Through the JPatible website, you will be able to pay both the JScreen fee for its genetic testing and genetic counseling and the fee for JPatible couple compatibility matching services. The total fee for the global service is $325 for all participants with either private health insurance or Medicaid, and $475 for individuals without health insurance. The JPatible portion of the combined fee is $175 per patient.
JScreen or their participating third party laboratory, will bill your insurance, if applicable. You will not be responsible for any additional out-of-pocket payments to JScreen or the JPatible program. Should your personal healthcare provider be involved in ordering the JScreen test or in discussing the results of testing with you, you will be responsible for any additional charges by the healthcare provider.
Confidentiality of Your Health Information
Any information obtained as a result of your participation in the JPatible program as well as your test results, will be kept confidential. A copy of your signed Consent form will be retained by JPatible in perpetuity. Nevertheless, Federal laws require that your privacy and security, and unauthorized access to your health information be protected.
Authorization to Release Test Results and Personal Information
As an integral part of this process, information must be transferred to various individuals in a secure manner. The persons or entities to whom you are authorizing the test results may be disclosed are listed in this Consent form
By accepting this Consent form and the JScreen documents, you authorize and consent to allow certain employees and agents of JPatible to receive your genetic test results from JScreen, to review your genetic test results, genetic counseling information, and your personal and medical information, and share those results with:
- Your email address
- Your partner, if applicable, when you provide written consent and identify such other individual(s)
- Another JPatible program participant, if you each provide written or telephonic consent (including by email and fax) to JPatible to conduct a compatibility assessment
- Other at risk family Participants, if you provide specific written consent
Agreement to Alternative Dispute Resolution
I agree that any claim, dispute or controversy arising out of or related to this Agreement shall be resolved by final and binding arbitration in accordance with the arbitration rules of the American Health Lawyers Association. I understand and agree that this agreement includes and encompasses any claims arising out of or relating to services which shall be provided to me pursuant to this Agreement. Any such controversy or claim shall be arbitrated on an individual basis, and shall not be consolidated in any arbitration with any claim or controversy of any other party. Participant further waives the right to bring, and agrees not to participate in, any class action, consolidated, multi-district or collective action, or private attorney general action. The arbitration shall be conducted in the State, City and County of New York, and judgment on the arbitration award may be entered by any court having jurisdiction thereof. I understand that this Agreement is also binding on any individual or entity claiming by or through me or on my behalf.
The JPatible Services are provided on an “as-is” basis without any warranty of any kind. JPatible and any third party vendors specifically disclaim all warranties, express or implied, with respect to the JPatible Services or components thereof, including, without limitation, the implied warranties of merchantability and fitness for a particular purpose or the warranties arising from a course of performance, a course of dealing or trade usage. JPatible makes no warranty that the JPatible site or Services or access to the JPatible site or Services or the results derived there from will be uninterrupted, secure, complete, accurate or error free, nor does JPatible make any warranty as to any electronic communication services used in conjunction therewith. JPatible shall have no liability whatsoever for any claims relating to JPatibile’s compatibility counseling services, or Participant’s ability to access or use the JPatible site or Services. The parties agree that JPatible has no liability or responsibility with respect to JScreen’s compliance with any and all applicable laws, rules and regulations.
Neither JPatible nor its third party vendors assumes any liability or responsibility to Participants for any damage, loss or injury to Participant or any third party, including, without limitation, any
harm, death or disability arising from any use by Participant of any advice, feature, information, idea or instruction obtained as a result of the JPatible site or Services, or from the services of any Provider with whom Participant makes an appointment through the Services.
JPatible does not in any way endorse JScreen. In no event shall JPatible be liable to Participant or anyone else for any decision made or action taken by Participant in reliance on the services of JScreen or JPatible.
As a policy, JPatible does not pay indirect costs to its partners or programs that it sponsors.
Limitation of Liability
Participant’s sole and exclusive remedy for any dispute with JPatible is the termination of JPatible’s services. Notwithstanding any damages Participant might incur for any reason whatsoever, the entire liability of JPatible to Participant under any theory of recovery shall be limited to the actual damages that Participant incurs, up to $100.
Notwithstanding anything to the contrary in this Agreement, to the maximum extent permitted by applicable law, in no event shall JPatible (or JPatible’s respective third party suppliers/licensors) be liable for any special, incidental, punitive, indirect, or consequential damages (including lost profit or revenue) whatsoever arising out of or in any way related to this Agreement or to the services provided under this agreement. Participant specifically understands and agrees that JPatible disclaims all warranties and liability with respect to any damage or loss suffered by Participant, and the costs of procurement of any substitute goods or services.
By agreeing below, I verify that I am the person who will receive compatibility counseling services from JPatible. I agree to the JPatibile program requirements contained herein.