Privacy Policy

The Genetics Policy Hub website was a program of the National Coordinating Center for the Regional Genetics Networks (NCC). NCC was funded by the Health Resources and Services Administration (HRSA) to the American College of Medical Genetics and Genomics.

As NCC was housed within ACMG, please see below for the terms of conditions of using this website from our parent organization. Please note that while NCC is housed within ACMG, the information contained on this website is developed solely by NCC and is not influenced by ACMG policy/advocacy efforts.

In order to respect the privacy interests of Members of the American College of Medical Genetics and Genomics (“ACMG”), and other individuals participating in ACMG activities (together, “ACMG Users”), the ACMG is taking steps to determine your privacy wishes and to attempt to manage your data accordingly. We want ACMG Users to understand why their data is collected, how it is used, and how ACMG protects their data, and we want to provide them with the flexibility to decide what information they want to receive, have shared or have removed from our systems.

This ACMG Privacy Policy/Website Terms and Conditions of Use Notice (“Notice”) explains how the ACMG, the ACMG Foundation, and the sub-contractors ACMG has engaged to fulfill our business services, collect and process your Personal Data. It also provides the Terms and Conditions of use of our website, ACMG.net (the “Site”). Each time you use the Site, the current version of the Notice will apply. The Notice is subject to change and users should check the date of this Notice (which appears at the top) and review any changes since the last version. This Notice is applicable to all Site visitors.

“Personal Data” is any information that enables us to identify you, directly or indirectly, by reference to an identifier such as your name, identification number, location data, online identifier or one or more factors specific to your physical, physiological, genetic, mental, economic, cultural or social identity.

WHO WE ARE
The American College of Medical Genetics and Genomics (“ACMG”) is a not for profit corporation organized and operated under the laws of the State of Illinois in the United States, and exempt from the payment of federal income tax under Section 501(c)(6) of the U.S. Internal Revenue Code. Its affiliated foundation, the ACMG Foundation for Genomic Medicine (the “ACMG Foundation”) is a not for profit corporation organized and operated under the laws of the State of Illinois in the United States, and exempt from the payment of federal income tax under Section 501(c)(3) of the U.S. Internal Revenue Code. Both organizations are headquartered in Bethesda, Maryland in the United States.

HOW TO CONTACT US
If you have any questions or concerns about our Privacy Policy/Website Terms and Conditions of Use Notice, please contact us at dataprivacy@acmg.net. Alternatively, you can contact us by phone at 301-718-9603, by fax at 301-718-9604 or by postal mail: 7101 Wisconsin Avenue, Suite 1101, Bethesda, MD 20814, USA.

HOW WE COLLECT PERSONAL DATA

We may collect and process the following Personal Data:

Contact information, which you provide when corresponding with us by phone, fax, e-mail, or through our online website submission portals. This includes information you provide when you participate in social media functions on our Site and when you report a problem with our Site. The information you give us may include your name, address, e-mail address, IP address.

Other personal data we collect from you
Each time you visit our Site we will automatically collect the following information:

• Technical information, including the Internet protocol (IP) address used to connect your computer or device to the Internet, browser type and version, time zone setting, browser plug-in types and versions, operating system and platform;
• Information about your visit, including pages you viewed or searched for, page response times, download errors, length of visits to certain pages, page interaction information (such as scrolling, clicks, and mouse-overs), methods used to browse away from the page, and any phone number used to call our customer service number; and
• Location information

Non-Personal Data

We collect information that is sent to us automatically by your web browser and we may use this information to generate aggregate statistics about visitors to our Site, including, without limitation:

IP addresses
Browser type and plug-in details
Device type (e.g., desktop, laptop, tablet, phone, etc.)
Operating system
Local time zone

We may use non-Personal Data for various business purposes such as providing customer service, fraud prevention, market research, and improving our Site. Please check your web browser if you want to learn what information your browser sends or how to change your settings.

HOW WE USE YOUR PERSONAL DATA
We will only process your Personal Data, including sharing it with third parties, where (1) you have provided your consent which can be withdrawn at any time, (2) the processing is necessary for the performance of a contract to which you are a party, (3) we are required by law, (4) processing is required to protect your vital interests or those of another person, or (5) processing is necessary for the purposes of our legitimate commercial interests, except where such interests are overridden by your rights and interests.

We may use Personal Data that you provide directly to us for the following purposes:

to provide our newsletter and other publications;
to respond to your questions and provide related services;
to provide you with information about other events, products and services we offer that are similar to those that you have already signed up for;
to provide you, or permit selected third parties to provide you, with information about events, products or services we feel may interest you; and
to transfer your information as part of a merger or sale of the business.

Information we collect about you

We will use Personal Data that we have collected about your use of our Site:

to administer our Site and for internal operations, including troubleshooting, data analysis, testing, research, statistical and survey purposes; to improve our Site to ensure that content is presented most effectively for you and your computer;
as part of our efforts to keep our Site safe and secure;
to measure or understand the effectiveness of advertising we serve to you and others, and to deliver relevant advertising to you; and
to make suggestions and recommendations to you and other users of our Site about goods or services that may interest you or them.

WHEN WE SHARE YOUR PERSONAL DATA AND WHO CAN ACCESS IT
We may share your Personal Data for the purposes described in this Notice with:

a member of our group
partners, suppliers and sub-contractors, for the performance of obligations arising from your participation, or any other contract we enter into with them or you or to provide you with the information, products and membership services that you request from us
analytics and search engine providers that assist us in the improvement and optimization of our Site
trusted third-party companies and individuals to help us provide, analyze, and improve the Site and our membership services (including but not limited to data storage, maintenance services, database management, web analytics and payment processing)
in the event that we sell or buy any business or assets, in which case we will disclose your Personal Data to the prospective seller or buyer of such business or assets
if ACMG, or substantially all of its assets are acquired by a third party, in which case Personal Data held by it about its customers will be one of the transferred assets.

the technical and organizational security measures governing the processing to be carried out and who can demonstrate a commitment to compliance with those measures.

SHARING YOUR PERSONAL DATA
Your personal data will not be shared outside of NCC.

SECURITY
Although we use security measures to help protect your Personal Data against loss, misuse or unauthorized disclosure, we cannot guarantee the security of information transmitted to us over the internet.

All information you provide to us is stored on secure servers.

Any payment transactions will be encrypted using SSL technology.

HOW LONG WE STORE YOUR PERSONAL DATA
We will store your Personal Data, in a form which permits us to identify you, for no longer than is necessary for the purpose for which the Personal Data is processed. We may retain and use your Personal Data as necessary to comply with our legal obligations, resolve disputes, and enforce our agreements and rights, or if it is not technically reasonably feasible to remove it. Consistent with these requirements, we will try to delete your Personal Data quickly upon request.

Retention

We will retain your information for as long as your account is active or as needed to provide you with our Site. If you wish to cancel your account or request that we no longer use your information to provide you service, contact us at dataprivacy@acmg.net. We will retain and use your information as necessary to comply with our legal obligations, resolve disputes, and enforce our agreements. We maintain one or more databases to store your Personal Data and may keep such information indefinitely.

WHERE WE STORE YOUR PERSONAL DATA
The Personal Data that you provide to us is generally stored on servers located in the United States.

COOKIES POLICY
Our cookie policy is available upon request.

CHILDREN’S PRIVACY
Our Site is not directed to children under the age of 13. If you are not 13 years or older, do not use our Site. We do not knowingly collect Personal Data from children under the age of 13. If we learn that Personal Data of persons less than 13 years-of-age has been collected through our Site, we will take the appropriate steps to delete this information. If you are a parent or guardian and discover that your child or a minor under the age of 13 has posted, submitted or otherwise communicated Personal Data to our Site without your consent, please alert us at ACMG dataprivacy@acmg.net so that we may take appropriate action to remove the minor’s Personal Data from our systems.

LINKS TO THIRD PARTY SITES AND SERVICES
Our Sites may contain links to third party websites, applications and services not operated by us. These links are provided as a service and do not imply any endorsement by us of the activities or content of these sites, applications or services nor any association with their operators. ACMG is not responsible for the privacy policies or practices of any third party including websites or services directly linked to our Service. We encourage you to review the privacy policies of any third-party site that you link from our Service.

YOUR RIGHTS

Additionally, if you prefer not to receive marketing messages from us, please let us know by clicking on the unsubscribe link within any marketing message that you receive or by sending a message to us at acmg@acmg.net.

WEBSITE TERMS AND CONDITIONS OF USE
By entering and using the ACMG Site, you acknowledge and agree that you have read and understand these terms and conditions of use of acmg.net, that the provisions, disclosures and disclaimers set forth above are fair and reasonable, and that your agreement to follow and be bound by them is voluntary and is not the result of fraud, duress or undue influence exercised upon you by any person or entity.

You also agree to indemnify and hold harmless ACMG, the ACMG Foundation, and their officers, directors, members, agents, affiliates, third-party information providers, licensors, and others involved in the delivery of the Site or the delivery of information, products or services over the Site, from and against any and all liabilities, expenses, damages, and costs, including reasonable attorney’s fees, from any claim, complaint or damage arising out of or in connection with your use of the site, including but not limited to any violation by you of these terms and conditions.

SUMMARY OF IMPORTANT LEGAL INFORMATION
The geneticspolicy.nccrcg.org website (the “Site”) is produced by the ACMG. All use of the Site is subject to the Terms and Conditions set forth herein. By entering and using the Site, you acknowledge that you have read and understood such Terms and Conditions and that you agree to abide by them. The Site is designed and intended for educational purposes only. ACMG does not endorse, guarantee, warrant, or recommend any information, products or services discussed or advertised on the Site or linked from the Site.

No Medical Advice or Physician-Patient Relationship. THE CONTENT OF THE SITE IS PROVIDED FOR INFORMATIONAL PURPOSES ONLY AND IS NOT, AND SHOULD NOT BE CONSIDERED TO BE, MEDICAL ADVICE. THIS INFORMATION IS NOT INTENDED TO CREATE, AND RECEIPT OF IT DOES NOT CONSTITUTE, A PHYSICIAN-PATIENT RELATIONSHIP. THE CONTENT IS NOT INTENDED FOR USE IN THE DIAGNOSIS OR TREATMENT OF ANY INDIVIDUAL CONDITION OR AS A SUBSTITUTE FOR A CONSULTATION WITH A LICENSED MEDICAL PROFESSIONAL. THE CONTENT SHOULD NOT BE CONSIDERED COMPLETE; IS NOT EXHAUSTIVE; AND DOES NOT COVER ALL DISEASES, AILMENTS, PHYSICAL CONDITIONS, OR THEIR DIAGNOSIS OR TREATMENT. THE CONTENT SHOULD NOT BE USED IN PLACE OF A VISIT, CALL OR CONSULTATION WITH, AND THE ADVICE OF, YOUR PHYSICIAN OR OTHER HEALTH CARE PROVIDERS. SHOULD YOU HAVE ANY HEALTH CARE-RELATED QUESTIONS, CALL OR SEE YOUR PHYSICIAN OR OTHER HEALTH CARE PROVIDER PROMPTLY. TALK TO YOUR DOCTOR OR PHARMACIST BEFORE TAKING ANY PRESCRIPTION OR OVER THE COUNTER DRUGS, INCLUDING ANY HERBAL MEDICINES OR SUPPLEMENTS. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING THAT YOU HAVE READ ON THE SITE.

Information Presented by ACMG. The information presented on behalf of ACMG on the Site is designed for informational and educational purposes only. Although ACMG endeavors to ensure the accuracy and reliability of information presented by or on behalf of ACMG on the website, it does not guarantee the accuracy, completeness, efficacy or timeliness of such information, and therefore, makes no representation or warranty regarding the same. Furthermore, ACMG does not endorse, guarantee, warrant, or recommend any information, products or services discussed or advertised on the Site or linked from the Site. Reliance on any information, products or services appearing on the Site that is provided by ACMG or ACMG employees is solely at your own risk.

Information Presented by Users and Third Parties. Any content and/or opinions uploaded or submitted by a third party, including all materials, articles, hyperlinks, documents, spreadsheets, presentations, images, individual user profiles, comments, opinions, or other dialogue, any other content or opinions in any form and responses to questions (hereinafter “User-Posted Content”) are solely the opinions and responsibility of the person or entity submitting them and do not necessarily reflect the opinions of ACMG. ACMG makes no representation or warranty regarding User-Posted Content that is posted or uploaded by users of the Site or other third parties, and ACMG expressly disclaims any and all liability related thereto. By using the Site, you agree to hold ACMG harmless from any and all claims arising out of User-Posted Content. Reliance on any information, products or services appearing on the Site, whether provided by third parties at the invitation of ACMG or visitors or contributors to the website is solely at your own risk.

Disclaimer of Liability of ACMG and its Licensors. The Site and information provided on the Site is provided on an “as is” and “as available” basis, with all faults. Neither ACMG nor any person associated with ACMG makes any warranty or representation with respect to the quality, accuracy, or availability of the Site. Specifically, but without limiting the foregoing, neither ACMG nor anyone associated with ACMG warrants or represents that the Site or the information provided on the Site will be accurate, reliable, error-free, uninterrupted; that defects will be corrected; that the Site or the servers that make them available are free from viruses or other harmful components; or that the Site will otherwise meet your needs or expectations. ACMG disclaims all warranties of any kind, express or implied, including any warranties of merchantability, fitness for a particular purpose or non-infringement. In no event will ACMG or its contractors be liable for any damages of any kind, under any legal theory, arising out of or in connection with your use of, or inability to use, the Site, including any direct, indirect, incidental, special, consequential or punitive damages, including, but not limited to, lost profits or damages resulting from delay, interruption in service, viruses, deletion of files or electronic communications, or errors, omissions, or other inaccuracies in the Site or the content transmitted on the Site or personal injury, whether or not there is negligence by ACMG and whether or not ACMG has been advised of the possibility of any such damages.

Member and User Obligations. You agree to comply in all respects with these Terms and Conditions as they may be amended, updated or revised from time to time. Your failure to comply with the provisions of copyright and trademark restrictions and member obligations may expose you to civil and/or criminal liability.

Copyright and Trademark Notices. The content of material provided by ACMG on the Site is copyrighted by ACMG or used by ACMG under license or other legal authority. ACMG and its licensors retain all copyrights and other proprietary rights in or relating to any content, including any software, provided on the Site. All rights are reserved and such content may not be reproduced, downloaded, modified, published, displayed, disseminated, or transferred, in any form or by any means, except with the prior written agreement of ACMG or as indicated below. You may download and print a small number of copies of the content for scientific or educational uses. You may not sell, transfer, reproduce, transmit, distribute, perform or display such content for any commercial purpose without the prior express written consent of ACMG.

CHANGES TO THIS NOTICE
If we make any material changes to this Notice or the way we use, share or collect personal Data, we will notify you by revising the “Effective Date” at the top of this Notice, prominently posting an announcement of the changes on our Site, or sending an email to the email address you most recently provided us (unless we do not have such an email address) prior to the new policy taking effect.

Any changes we make to this Notice in the future will be posted on this page and, where appropriate, notification sent to you by e-mail. Please check back frequently to see any updates or changes to this Notice.