Ok,
So after fielding a ton of questions regarding Coriell and sending a bunch of people towards their site, I figured I should give all of you some key points about the Study
Launched by Coriell Institute for Medical Research in December 2007, the CPMC is an
evidence-based research study designed to determine the benefit of using personal
genome information in clinical decision-making.
Goals
The CPMC is a forward-looking, collaborative effort involving physicians, scientists,
ethicists, genetic counselors, information technology experts and volunteer study
participants. The goal is to better understand the impact of genome-informed medicine and
to guide its ethical, legal and responsible implementation.
The CPMC also aims to understand why people often respond differently to treatments, and
to discover presently unknown genes that elevate a person’s risk of cancer and other
complex diseases.
Key Points of Differentiation
The CPMC is unlike any other organization that supplies personal genetic information to
individuals.
▪ First, the CPMC is a research study that has been approved by an Institutional Review
Board, whose mission is to review research studies involving human subjects to ensure that
the rights of research participants are protected.
▪ Second, the CPMC is a research study that provides participants with information about
themselves. Many research studies ask for subjects to participate for the good of science
while supplying little or no information back to participants.
▪ Third, the CPMC is not returning all personal genetic information back to participants but
only variants that an external advisory board (the Informed Cohort Oversight Board ) has
deemed potentially medically actionable. The actions of this board are completely transparent.
▪ Fourth, the CPMC is requiring participants to complete web-based surveys. After
establishing an account on the web portal, participants will be asked to complete a series of
questionnaires regarding their medical history, family history and lifestyle. Some of this
information will be used to customize participant genetic variant reports, by adding
information provided in the surveys (age, smoking status etc) that affects risk for a health
condition.
▪ Fifth, participants are given control of their personal genetic variant information and can
opt to allow access to their genetic result data to physicians, CPMC genetic counselors or
others.
▪ Sixth, participants in the CPMC study can opt to release their de -identified genetic and
medical history information to the biomedical research community. It is completely voluntary.
The Sherpa Says: Phase one has commenced, phase 2 will begin in April when participants will be given access to their data.....For free and they can view it forever....not just for 1 year......
Coriell Personalized Medicine Collaborative (CPMC)
Launched by Coriell Institute for Medical Research in December 2007, the CPMC is an
evidence-based research study designed to determine the benefit of using personal
genome information in clinical decision-making.
Goals
The CPMC is a forward-looking, collaborative effort involving physicians, scientists,
ethicists, genetic counselors, information technology experts and volunteer study
participants. The goal is to better understand the impact of genome-informed medicine and
to guide its ethical, legal and responsible implementation.
The CPMC also aims to understand why people often respond differently to treatments, and
to discover presently unknown genes that elevate a person’s risk of cancer and other
complex diseases.
Key Points of Differentiation
The CPMC is unlike any other organization that supplies personal genetic information to
individuals.
▪ First, the CPMC is a research study that has been approved by an Institutional Review
Board, whose mission is to review research studies involving human subjects to ensure that
the rights of research participants are protected.
▪ Second, the CPMC is a research study that provides participants with information about
themselves. Many research studies ask for subjects to participate for the good of science
while supplying little or no information back to participants.
▪ Third, the CPMC is not returning all personal genetic information back to participants but
only variants that an external advisory board (the Informed Cohort Oversight Board ) has
deemed potentially medically actionable. The actions of this board are completely transparent.
▪ Fourth, the CPMC is requiring participants to complete web-based surveys. After
establishing an account on the web portal, participants will be asked to complete a series of
questionnaires regarding their medical history, family history and lifestyle. Some of this
information will be used to customize participant genetic variant reports, by adding
information provided in the surveys (age, smoking status etc) that affects risk for a health
condition.
▪ Fifth, participants are given control of their personal genetic variant information and can
opt to allow access to their genetic result data to physicians, CPMC genetic counselors or
others.
▪ Sixth, participants in the CPMC study can opt to release their de -identified genetic and
medical history information to the biomedical research community. It is completely voluntary.
▪ Seventh, the CPMC plans to enroll individuals with cancer through their healthcare
provider as well as participants from the general public through open informed consent
sessions.