We received an email today from National Organization for Rare Disorders (NORD). Many times over the years that I have been associated with the KDA I have heard of the desire to have genetic testing, but because of a concern that the information would be made available to insurance companies or others the test was not done. Wondering whether you have KD, yet not being able to confirm it is a difficult situation (between a rock and a hard place). This might be a good opportunity for a family that has faced this issue.

NY Times Looking for Patients to Interview

TO: NORD Member Organizations

Re: New York Times article regarding genetic testing and medical records

The New York Times has contacted NORD for assistance in identifying patients to interview for a story on medical privacy and, specifically, what should be done when patients say they don’t want results from genetic tests in their medical records. The AMA says that doctors can keep a separate medical record without such data but, if they send it on to insurers, they will need to note that genetic information has been withheld which, of course, is a red flag.

The Times is looking for patients or family members to interview who have faced these issues. If any of your members would be interested in being interviewed, please have them write to mdunkle@rarediseases.org mdunkle@rarediseases.org with a very brief (one or two paragraphs) description of their experience. The story will be written within the next few days so it would be important to reply soon.