By Institute of Medicine, National Cancer Policy Forum

These complaints of a workshop provided to the Institute of Medicine's (IOM) nationwide melanoma coverage discussion board on March 30, 2007, are the results of discussion board discussions approximately genetic trying out and counseling at its conferences on June sixteen and October 30, 2006. these discussions, led via discussion board contributors Betty Ferrell and Patricia Ganz, famous that genetic trying out and counseling have gotten extra complicated and critical for informing sufferers and households of dangers and advantages of convinced classes of motion, and but geared up professional courses are briefly supply.

The subject material consists of not just the medical and scientific facets but additionally crew and compensation matters, between others. Drs. Ferrell and Ganz proposed that the discussion board may provide an invaluable assessment of many of the very important implications of those matters by means of keeping and reporting a workshop at the topic. They volunteered to paintings with employees to prepare and lead any such workshop. The schedule for the workshop is reproduced within the appendix to those complaints. It contains the shows of the invited audio system and the reviews of audio system, discussion board contributors, and others in attendance as transcribed and edited to cast off redundancies, grammatical blunders, and another way cause them to extra readable. Cancer-Related Genetic trying out and Counseling : Workshop Proceedings summarizes the workshop.

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Additional resources for Cancer-Related Genetic Testing and Counseling

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These have particular relevance for this discussion, because the first example of an IVDMIA was a test that claimed to determine whether a woman is likely to have a recurrence of breast cancer. The Oncotype DX assay is claimed to analyze the expression of a panel of 21 genes and predict the likelihood of recurrence of stage I or II estrogen receptor positive breast cancer. The FDA is concerned about this type of test, because it examines multiple signals and then uses an algorithm (which is not transparent to the clinician) to make a treatment decision.

It is also a good lens for looking at the state of oversight of genetic testing more generally and the gaps that exist. I think we can all agree that we would like accurate information to diagnose, treat, and prevent disease; that laboratories should be qualified; that providers Copyright © National Academy of Sciences. All rights reserved. html PREPARED PRESENTATIONS AND DISCUSSION 41 and patients ought to have adequate information about genetic tests; and that we need a regulatory system that encourages doing a good job, rather than the current one, where the incentive is to do less and not to go through the FDA.

Joseph Fraumeni, Director, Division of Cancer Epidemiology and Genetics, National Cancer Institute: What proportion of the demand for genetic counseling is cancer related and cancer relevant? Also, you mentioned the concerns about the age at which someone gets the genetic testing and counseling. What do you do about the syndromes that involve childhood cancers? Are there some special concerns or guidelines? Ms. Bennett: In our center, we have a children’s hospital that sees some of those families, but we do get requests for testing for BRCA in children.

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