The completion of the human genome sequence and the more recent understanding of patterns of human genetic variation have unlocked the door to a new level of knowledge about the causes of human diseases such as cancer, heart disease and Alzheimer's. With the door unlocked, scientists are poised for the first time to open the door and enter a new world of molecular pathways that cause these deadly diseases and to understand how each person's disease course and response to therapy may be different. Personalized medicine will fundamentally change medical practice in the next five to ten years, but major challenges remain regarding how genome-informed medical practice should operate.

The goal of the Coriell Institute's Coriell Personalized Medicine Collaborative is to better understand the coming impact of genome-informed medical practice and to guide its ethical, legal and responsible implementation. The project is a forward thinking, collaborative effort involving participant volunteers, physicians, scientists, ethicists and information technology experts. The aim is to allow participants to benefit from the improved health that genome-informed medical practice will bring, while ensuring that participant privacy is vigorously protected. The project seeks to enroll 10,000 participants in the first three years with an ultimate goal of 100,000 individuals.

Benefits for Volunteers
Participants will benefit from this project as their personal genome profiles will be correlated to effective medical interventions and/or recommended changes in lifestyle with the aim of personalizing and improving their medical care. Time requirements for participants are minimal: attend a Coriell Personalized Medicine Collaborative presentation to be informed of the project and enrollment process; read and sign the consent form (~10 minutes) and submit a small saliva sample (~5 minutes). At a later date, register a personal Coriell Personalized Medicine Collaborative account through a secure online portal (~5 minutes), complete an online medical history questionnaire (~15 minutes) and annually update contact information through this secure browser (~5 minutes). There are no other ongoing obligations to participate.

Coriell Institute
The Coriell Institute for Medical Research, based in Camden, New Jersey, is an internationally known non-profit biomedical research institution and the world's leading biobank. Under the leadership of new president Dr. Michael Christman, the Coriell Institute has established a state-of-the-art genotyping center and formed partnerships with several Delaware Valley hospitals - Cooper University Hospital, Virtua Health, and Fox Chase Cancer Center - to enroll employee and participant volunteers in a personalized medicine study that will correlate individual genome profiles with disease course and treatment outcomes.

The Coriell Personalized Medicine Collaborative
The study will seek to discover presently unknown genes that elevate an individual's risk of cancer, heart disease and other complex diseases; to understand why people often respond quite differently to treatments; and to explore how the resulting information can best be viewed and utilized by participants and their physicians in a secure, user-friendly environment. There is no charge to study participants. All volunteers will control their genetic profiles and will determine for themselves whether they wish the information to become part of their future personal medical records. Participants will have the option to view medically relevant information about their genomic profiles through a secure web-browser-based system. A variety of educational materials on genomics and medicine will be provided through streaming video and downloads at www.coriell.org. Additionally, educational seminars will be held regularly at convenient locations and times to further the educational outreach surrounding this personalized medicine initiative.

Access to Information About Your Genome
Participants in the project will control access to their genetic profiles and medical data and must grant access to their physician(s) before any information can be viewed by their physician or any other medical professional. Identifiable personal genome information will NOT be accessible to anyone without prior knowledge and consent. Only participants, or those they give consent to, will be able to access their genome information in an identifiable manner. A participant may withdraw consent at any time without providing reason, at which time their DNA sample will be destroyed. The withdrawal form will be available through the secure online database. It is illegal in New Jersey for an employer to discriminate in any way for purposes of employment or health insurance, based on a person's genetic profile. This protective New Jersey law applies to all participants in the Coriell Personalized Medicine Collaborative as all genome profiles in this study will be performed at the Coriell Institute in Camden, NJ. Participants are protected regardless of where they reside.

For More Information
See the list of Frequently Asked Questions (FAQs). Questions may also be addressed to Courtney Sill, Ph.D., Director of Communications at the Coriell Institute, (856) 757-9752 or .