Below is my response to the HDSA POC about the draft protocol. The first HDSA link was a correction to the second link to get one to the draft when it was put out for comment Don't know who screwed up, but it was put out under the HDSA byline.

"Really not qualified to comment on the medical/scientific/ethical content of the draft protocol. However, given far reaching potential impact of these recommendations for a protocol for genetic testing for HD, to ensure accurate incorporation of what is what since 1994 and to preclude missed or ignored errors. such as www.hdsa.org/gtproto versus www.hdsa.org/gtpcommunity, sincerely hope there will a peer review by qualified others than whose who participated/contributed in the writing or preparation of the draft.

One thing that stands out like a sore thumb is the disclaimer – “Statements and opinions expressed in this book are not necessarily those of the Huntington’s Disease Society of America, Inc. nor does HDSA promote, endorse, or recommend any treatment, therapy, or product mentioned herein.” If HDSA does not stand by the protocols “mentioned herein”. Why is HDSA publishing “A Genetic Testing Protocol For Huntington’s Disease” and why should “those working with people with Huntington’s disease and their families as well as the families themselves” use it as a guideline? "

From the south of Maryland
Fred Lothrop