First Genetic Trust signs agreement with Sloan-Kettering

The Clinical Genetics Service plans to conduct a clinical trial involving patients at risk for breast cancer using First Genetic Trust's on-line proprietary genetic banking system. The pilot

By Editor on Jan 18, 2001

The Clinical Genetics Service plans to conduct a
clinical trial involving patients at risk for breast cancer using First
Genetic Trust's on-line proprietary genetic banking system. The pilot
protocol under development will evaluate the feasibility and satisfaction with
internet-based systems for:

-- Dynamic informed consent during clinical testing and treatment,

-- Genetic counseling for new genetic tests for cancer risk, and

-- Provision of updated health information during clinical follow-up or
treatment.

"Over the last 10-15 years, our understanding of the genetic basis of
cancer has created untold opportunities to develop improved approaches for the
treatment and prevention of many cancers," said Kenneth Offit, MD, MPH, Chief
of Memorial Sloan-Kettering's Clinical Genetics Service. "At the same time,
these advances in genetics create sensitivities for many individuals regarding
the privacy of the information about their risk of disease. In working with
First Genetic Trust, we have the opportunity to evaluate new tools for
assuring the security and privacy of this sensitive information."

"We are honored to be working with the team at Memorial Sloan-Kettering," said Arthur Holden, Chairman and CEO of First Genetic Trust. "This institution has long represented the cutting-edge of cancer research and
treatment. We
expect the collaboration to provide much insight into the kinds of genetic
banking services that the clinical research community will find most valuable,
and to refine the offerings of First Genetic Trust as a result."

Over the next year, Dr. Offit and colleagues at Memorial Sloan-Kettering
Cancer Center will develop a study protocol to determine the effectiveness of
offering Internet-based informed consent, genetic counseling, and educational
materials to a small group of women at high-risk for breast cancer. Once the
type of genetic test has been determined, participants will be asked to
provide informed consent via the Internet and will have secure and
confidential access to genetic counseling and education. Researchers will
then determine the ability of the participants to obtain and retain sufficient
information about the proposed genetic test to ensure that consent is truly
informed.

The pilot study will also evaluate the role of the of the Internet
in providing updated health information in a confidential and secure manner.