Comments on: Support Your Right to Access Your Clinical Lab Results

By: margaret ann bledsoe

margaret ann bledsoe — Wed, 23 Nov 2011 01:12:57 +0000

I support being allowed to access all my genetic information. As an adoptee in Pennsylvania, which does not allow adult adoptees born in the same period as me access to any original birth records, this is the only way I can discover any familial disease tendencies or if I am a carrier. Although Pennsylvania has had a medical info registry for birth parents I was recently told that since its inception only a handful of birth parents have provided medical information. Without the genetic information provided by 23andMe I would still be clueless.

By: Shwu

Shwu — Thu, 17 Nov 2011 19:20:12 +0000

Hi Erica,

You can try submitting a comment even though it’s after the deadline — they sometimes still accept comments submitted late. Best of luck and thank you so much for the support!

Google has discontinued Google Health, so there will be no product integration between their services and 23andMe.

By: Erica

Erica — Tue, 15 Nov 2011 12:45:22 +0000

I just missed the deadline for this – how do you recommend we show our support for this from this point forward?

P.S. Any chance of adding Google Health features to 23&me?

By: Kate

Kate — Thu, 10 Nov 2011 17:17:46 +0000

Thank you for bringing this to our attention. I wrote a comment in strong support of this regulation. My late husband’s oncologist lied not only to us, but also our family doctor, about the type of lymphoma he had. We were told that with an aggressive chemo his odds of survival were 50 to 60 percent.

It was only after nine grueling months of hospitalizations for aggressive chemo and the subsequent infections, that we learned the truth. When it was clear that the chemo wasn’t working, he was given the option of a stem cell transplant. Rather the transmitting his records directly to the facility that did the transplants, the oncologist’s receptionist gave them to us. I scanned through them the day before our appointment and was shocked to see the biopsy results, true diagnosis, and prognosis (very poor). A quick google search showed that no one had ever survived this type of lymphoma. I was infuriated.

My husband was given false hope and endured nine months of unnecessary suffering you cannot begin to imagine. Had we, or our family doctor, known the truth we would have undoubtedly just called in hospice and my husband would have been much better prepared for and suffered much less at his death. The final tab for his ‘treatment’ was $700,000 of which we paid $20,000.

I will never again trust a doctor and will always ask to see ALL test results, but this regulation would make it much easier.

By: Rachel

Rachel — Mon, 07 Nov 2011 18:04:46 +0000

Even though this is a proposed rule change by an agency and not legislation, I recommend CC’ing your legislators–both senators and your congressman–in addition to mailing the original to Medicare/Medicaid. While they may not be able to vote on this rule, they can always influence these decisions or propose legislation.

Don’t bother writing to the President. Not because he won’t do anything, just because in my experience while working in government, he gets so many letters that the issue will be over and done with before anyone at the WH reads your letter. If you want to comment to him go to his website or call.

http://www.usa.gov/Contact/Elected.shtml

http://www.whitehouse.gov/contact