A new era of personalised medicine: or how I got myself sequenced for free
souradip.mookerj.ee
A new era of personalised medicine: or how I got myself sequenced for free
1–10 of 79 posts
Re: A new era of personalised medicine: or how I got myself sequenced for free
#2I'm all in favour of signing up as a marrow donor (I'm registered with DKNS myself) but burdening charities with administrative tasks to save yourself money feels a bit... cheap, and you get a lot more for paying for a full genome sequencing or even a 23andme report.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#3[deleted]
Re: A new era of personalised medicine: or how I got myself sequenced for free
#4Let me be blunt, costing charities time and money that they could use for their actual mission of helping people to find a life-saving match with a donor is a real shitty move. This is freeloading at its finest.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#5I feel like GDPR-ing a bone marrow registry to obtain one's data is rude. I got my HLA data from the registry by asking politely.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#6"You may be aware of bone marrow, or stem cell transplants. These are life-saving for the people who need them, especially after a blood cancer. You can sign up for free at charities such as Anthony Nolan or DKMS in the UK."
"And it was a win-win scenario - they get to call upon me if someone needs my stem cells (a painless procedure that's no more complicated than donating blood)!"
Maybe I'm confused but this person doesn't seem to know what is involved with donating bone marrow. It is a serious surgical procedure done under anesthesia.
https://bethematch.org/support-the-cause/donate-bone-marrow/...
Re: A new era of personalised medicine: or how I got myself sequenced for free
#7Let me be blunt, costing charities time and money that they could use for their actual mission of helping people to find a life-saving match with a donor is a real shitty move. This is freeloading at its finest.
I wonder if charities couldn't offer it as an incentive to attract more potential donors? Agree to participate, and we'll give you your sequence upfront, no data-release-requests needed? Obviously some people are trying hard not to be sequenced for any reason (because of privacy concerns apparently) but plenty of other people are interested in heredity, or health implications.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#8"You may be aware of bone marrow, or stem cell transplants. These are life-saving for the people who need them, especially after a blood cancer. You can sign up for free at charities such as Anthony Nolan or DKMS in the UK." "And it was a win-win scenario - they get to call upon me if someone needs my stem cells (a painless procedure that's no more complicated than donating blood)!" Maybe I'm confused but this person…
The there are two procedures, the stem cell procedure is acurately described according to the link you posted.
> How are bone marrow and peripheral blood stem cell (PBSC) donation different?
> Donating bone marrow is a surgical procedure done under general or regional anesthesia in a hospital. While a donor receives anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone.
> PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#9I personally feel that this embodies the hacker spirit perfectly. Has this service been intended to allow the donor access to his sequencing data? No. Can someone use the systems in place to get this info anyway? Yes, as it shows.
The other comments mind the burden to the charities. I personally cannot agree here. After all, this is the donors data. One might even think, that proactively sharing data could increase the number of donors.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#10An importing distinction: The author did not get himself sequenced. He had genotyping.
Genotyping basically picks out a few specific data points. Sequencing reads an entire piece or entire genome completely.
From a health perspective, genotyping pulls data points that we already know can be markers for something significant. Sequencing gets a lot more data, and would sort of be "future proof" against the need to do further testing if new markers were identified you can just look at the data already gathered. Otherwise you'd need to get Genotyping done again.