This blog was reproduced from a post by LittleLab4CF , a Super Moderator on the forum. 

“I found myself in a lively discussion with one of my doctor’s about the business of Genomics and what they really want. Dr. “Nancy” was remarking that she’d completed her Christmas shopping, buying 23&Me for pretty much everyone in the family. This amounted to about 20 people. My doctor isn’t stupid, she’s aware that the $50 presents are not going to pay for the tests, they couldn’t do it at $100 so they are making money at half the price.

She showed me the details of the contract and you can agree to allow your depersonalized data used for science. They don’t tell you that they intend to sell your depersonalized data to R&D facilities in pharmaceutical companies and Universities. Dr. Nancy sees nothing but good things coming from doing this. Her family will know more about their genetics and who knows what great discoveries can come from Science Research to help them down the road.

What 23&me,, Helix and now other consumer genetic services are missing, could fill a book. They have the ability to further analyze your genetics and sell it. They are currently pretty sketchy tests. The quality of genetic testing depends on robust DNA amplification, more time on a critical process, the better. Sort of like laundry, a swish in the sink, delicate, Permanent Press and heavy duty each cleans the clothing better, revealing subtle shades of color clearly.

I’m hoping to see 1000 plus. We should have every CFer and CF family in this. With stuff for monitoring our bodies like Fitbit and blue tooth features on our spirometry, glucose levels, plus all of the tests we CFers have way too many of, images and imaging reports paint an incredibly detailed profile, gathering the past and monitoring the present all bundled together and zipped up with our DNA to make an enormously valuable Genomic Diary, a virtual person who has a health file of gold. Not the same as consumer genetic services and like software, sold over and over.

Jeanne has been the driving force behind this and it is for us. An added bonus is a small portion of the sale of our Genomic Diaries is going to fund now and for the future. She’s devoted over 20 years of her life to providing a voice for the CF community. It’s high time we paid her back.

Please take the Survey and continue to participate in this fantastic opportunity!!!”


The Survey video and link can be found here:


DIY nebulizer sterilizer hack for Cystic Fibrosis treatments (member story)


Stem cell transplants for lung regeneration - promising breakthrough in China