I've signed up to have my genome sequenced

[Reeve]

So I signed up to have my genome sequenced and the result made publicly available for scientific study, along with certain voluntarily disclosed personal health details and some other personal details etc. I'm doing it with a study called the Personal Genome Project, which works with the National Institute of Standards and Technology (NIST in the USA). My name won't be associated with my genome or my health details, but there's a reasonable chance that someone could work out which sample was mine at some point.

I recognize that there are certain risks involved in this, like insurance deciding not to cover someone who has certain genetic characteristics, or companies not wanting to hire someone with certain other characteristics. I don't foresee GATTACA ever happening, and I don't imagine I'll ever see any consequences from this, but I know it's possible. My father has already submitted his genetic sample to them for sequencing, so when we're both complete, I'll be able to see how his genome compares to mine. I'll be able to see genetic markers that show my ancestry. I'll be better equipped to know what sorts of genetic illnesses to watch for as I age.

I know there are a lot of risks, but I see some benefits to me, and HUGE benefits to science as a whole. I think the more we know about genetics, the better off humanity will be as a species, and I'm proud to be a small part of that.

This is the link to the project: http://www.personalgenomes.org/

Would you consider doing something like this, or is it too risky? Would you be afraid of what it might tell you about your family or about your potential medical future? Is genetic advancement important to you?

[Rukentuts]

I'd do it in a heartbeat. The public-sharing of my genome would be the only thing that would make me wary.

[Shadowmelded]

I was thinking about doing this recently but it's kinda pricey. I suffer from lactic acidosis that kinda appeared out of nowhere, no family history or anything so I'd love to see if there maybe is something they could pick up on or at least prevent it being passed on to any potential children.

[Reeve]

I was thinking about doing this recently but it's kinda pricey. I suffer from lactic acidosis that kinda appeared out of nowhere, no family history or anything so I'd love to see if there maybe is something they could pick up on or at least prevent it being passed on to any potential children.

Well this project is free to the participant, with the caveat that your data is public. Because the project takes on all the costs rather than the participant, it sometimes takes a while before they have the funding to sequence your DNA too.

[endersblade]

Wow, I'm totally all over that.

And when they finally finish mine, and I find out that I'm not from this horrible planet, maybe my people will come and take me home :-)

[Azutael]

Isn't a full genomic sequence still very expensive ? :P
I have only taken part in things like the genographic project, where they only look at ancestry.

Would gladly have my genome sequenced though, would be great to find out if I had any genetic dangers etc.

*oh it's free, since it's public. To bad you need to be US citizen... .P

[Deleted]

I would totally do this.

I know a disease would show up in there, Fructosemia, but other than that, I'm interested on what I would find out.

[Reeve]

Isn't a full genomic sequence still very expensive ? :P
I have only taken part in things like the genographic project, where they only look at ancestry.

Would gladly have my genome sequenced though, would be great to find out if I had any genetic dangers etc.

Like I said, it is expensive, and the project covers all the costs, which means that often they have a bunch of samples they can't sequence right away due to lack of funding. But they eventually get around to everyone, and none of the participants are out of pocket. That's good, because it wouldn't be a very good study if they only got samples from upper middle class and wealthy people.

[Deleted]

Like I said, it is expensive, and the project covers all the costs, which means that often they have a bunch of samples they can't sequence right away due to lack of funding. But they eventually get around to everyone, and none of the participants are out of pocket. That's good, because it wouldn't be a very good study if they only got samples from upper middle class and wealthy people.

I still don't understand this, is this very expensive? How much?

[Reeve]

I still don't understand this, is this very expensive? How much?

This study is FREE to the participants, but to the people running the project it's not cheap. This is what the National Human Genome Research Institute says about the costs of sequencing:

-snip- That image was wayyy too big. It basically said it's about $9k/person, but the costs are falling rapidly every year.

[Deleted]

9$ is a lot of money, if I had it though, I wouldn't mind paying that to fund the project.

[Howard Moon]

My name won't be associated with my genome or my health details, but there's a reasonable chance that someone could work out which sample was mine at some point.

Don't you sign a privacy agreement or something? That would be kind of outrageous if that institute sold the personal info to insurance companies etc.

[Reeve]

Don't you sign a privacy agreement or something? That would be kind of outrageous if that institute sold the personal info to insurance companies etc.

No, it's explicitly not private. They won't sell it to anyone, because it will be publicly available for anyone. What they will do for you is they give you the data privately for 30 days prior to posting it publicly. If you don't want them to post it, you can notify them during that time and they won't. If you don't stop them from posting it though, it will become publicly available. You can ask them at any time to take the info down, but that doesn't mean that other organizations who snagged the information will also take it down.

The whole point of the study, though, is to make genetic data available to all scientists, since that's often the best way to advance science.

[Deleted]

Most definitely would sign up if something like this was around here, and kudos for signing up yourself.

[slime]

Don't you sign a privacy agreement or something? That would be kind of outrageous if that institute sold the personal info to insurance companies etc.

So in this case, the insurance company just has to know to go there and check for any info on one of their current, or potential clients.

[Reeve]

So in this case, the insurance company just has to know to go there and check for any info on one of their current, or potential clients.

Well it's a little harder than that, because the study doesn't put the participant's name up there. They would have to be able to do something like, "OK, we know Reeve is a white guy with Winnebago and Mississippi Choctaw blood in him. We know he has X condition, which is genetic, so we could look for that marker, etc." If they wanted to, it's reasonable they could puzzle out which record is mine.

Of course, Obamacare says they can't deny coverage due to pre-existing conditions anymore, and there's also the GINA legislation that's supposed to protect people from genetic discrimination, but it's not particularly robust yet. I have faith that 1) insurance companies won't go to the effort, especially if they don't know I ever participated in the study to begin with and 2) as advances make it easier to sequence genomes, genetic discrimination legislation will improve as well.

[Deleted]

Cool! Looks mighty tempting.

I believe Christopher Hitchens had his genome sequenced. Francis Collins was an acquaintance of his who became a friend by the end of it. It allowed them to try some treatments for his oesophageal cancer specific to him, but unfortunately that cancer is a particular bastard and it wasn't enough. But, the old drunk donated his body to science, so hopefully, with the data from his sequencing and his remains being readily available, his being somewhat of a guinea pig (a very willing one) may benefit others in the future.

If it was available in the UK, think I'd probably apply for it.

[Howard Moon]

Maybe off-topic, but does getting your genome sequenced mean that they'll be able to create clones of you 1000 years from now?

[Lenonis]

Well it's a little harder than that, because the study doesn't put the participant's name up there.

I strongly recommend doing a bit more homework on this Reeve.

I went on the site, went to the participant list, picked one that had a few documents available and on one report it had his full name.

Yes, the participant was identified with a random identifier, but the documents loaded to his profile had the information. I would be EXTREMELY careful about doing this.

[Tradewind]

lulz brb cloning a Reeve.