Mid-Atlantic Cancer Genetics Network (MACGN)

On-line Privacy Statement and Legal Disclaimer

MACGN provides this statement so that you are aware of our privacy policy and practices and of the choices you can make about the way your information is used. To make this notice easy to find, we make it available on our homepage and on the bottom of every MACGN Web page.

Thank you for visiting our MACGN web site and for reviewing our Privacy Policy. We take data security and the privacy of your personal information very seriously. Our policy is clear:

We collect no information about you, other than information automatically collected and stored (see below), when you visit our web site unless you choose to provide that information to us.

NOTE: For information on the Medical Privacy, please go to www.hhs.gov/topics/privacy.html

Transparency of Sponsorship:

The Mid Atlantic Cancer Genetics Network and this Web site are grant funded by the National Cancer Institute of the National Institutes of Health. No commercial funding is accepted for these activities.

Information Automatically Collected and Stored:

When you browse through any web site, certain personal information about you can be collected. We automatically collect and temporarily store the following information about your visit:

the name of the domain you use to access the Internet (for example, aol.com, if you are using an American Online account, or stanford.edu, if you are connecting from Stanford University's domain);
the date and time of your visit; the pages you visited; and
the address of the web site you came from when you came to visit.

We use this information for statistical purposes and to help us make our site more useful to visitors. We do not use cookies to collect information.

Personally Provided Information:

On some MACGN Web pages, you can make requests, and register to receive materials. The types of personal information collected at these pages are name and contact information so that we can communicate back to you.

Unless it is specifically stated otherwise, no additional information will be collected about you. To prevent unauthorized access, maintain data accuracy, and ensure appropriate use of information, we have implemented appropriate physical, electronic, and managerial procedures to safeguard and secure the information we collect.

Registry Information: MACGN is funded by the National Cancer Institute and participates in a national Cancer Genetics Network (CGN) designed to enroll interested men and women at increased risk for cancer into research studies.

If you sign up to join the registry and you hit "Send" we will only get information you voluntarily share with us. We will follow up by sending you a questionnaire to complete with information regarding your family history of cancer. You should note that while we take precautions, such as encrypting communications where appropriate, if your communication is very sensitive, or includes information like your diagnosis or medical history, it should be sent via postal mail (such as the questionnaire). This is because electronic mail and other Internet communication channels are not necessarily secure against interception.

Data that you provide by filling out a MACGN questionnaire travels by ground mail to MACGN. Trained personnel enter this information into a secure MACGN database using a unique ID number. Your questionnaire is searchable by this ID number only and kept locked in a cabinet at the Johns Hopkins Medical Institutions. This confidential database is kept on a secured server that is password protected at two levels and includes a firewall. A firewall is a system that prevents unauthorized access to or from a private domain on a Web site.

If you consent to take part in a national Cancer Genetics Network study, you would be contacted for permission for that researcher to contact you directly. If you agree to participate in any of the CGN studies, you have the option to withdraw at any time.

Several times a year encrypted data from MACGN is sent to the national CGN registry at the University of California, Irvine, Calif. All personal identifying information is removed. Any information kept in the national CGN registry is stored using your unique ID number, not your name. The national registry database is also protected behind passwords and a firewall. Access to the national registry is limited to CGN registry personnel, and researchers whose projects have been approved by the NCI for one-time or project-specific use of the database.

Certificate of Confidentiality

This research program is covered by a Certificate of Confidentiality issued by the National Cancer Institute on behalf of the Secretary of the Department of Health and Human Services. The Certificate protects against any involuntary release of information about you, unless you or your guardian request it in writing. The researchers involved in this project cannot be forced to disclose your identity or any information collected about you during this project. This is true for any legal proceedings at the Federal, State, or local level, and regardless of whether they are criminal, administrative, or legislative proceedings. This Certificate does not prevent the quality control audit of your research records under some circumstances (for example, under the Federal Food, Drug, and Cosmetic Act or during the course of an internal program audit or evaluation).

Legal Disclaimer

The information on this Web site is designed for educational purposes only and is not provided as a professional service or as medical advice for patients. It is not a substitute for professional medical care. Users of this Web site should not rely exclusively on information provided in this Web site for their own health needs. If you have, or suspect you may have a health problem, you should consult your health care provider immediately. This Web site also provides links to other Web sites that may be useful or interesting, but are not owned or controlled by MACGN. We cannot be responsible for the content or privacy practices used by other Web site owners.

Please direct your questions/comments to bmay@jhmi.edu

Last updated: 9/27/01