Re: Ancestry DNA testing

september · ‎03-09-2010

a little info about 23andme:

http://www.forbes.com/sites/matthewherper/2015/01/06/surprise-with-60-million-genentech-deal-23andme...

I'm sure that people who sent in their info, had no idea the company would turn around and sell it for $60 million to genentech.

MaggieMack · ‎10-01-2014

Well, maybe it's an oops, but I just got mine back from 23&Me yesterday. Nothing I can do about it now, but I'm not going to lose sleep over it. My sister and brother and I had a question about some hidden family stories in our ancestry, and this pretty much answered it, as well as gave me some confidence about what I don't have to worry about.

I thought it interesting that it indicated I should have fast-twitch muscles, when I actually have slow-twitch for endurance. I could run forever, but never challenge Roger Bannister! Fast enough to qualify for Boston, but slow enough to know I could never win!

No act of kindness, no matter how small, is ever wasted. - Aesop

Noel7 · ‎03-09-2010

Hi september, your article says those involved DONATED their DNA and health information for research.

@september

bonnielu · ‎03-11-2010

Yep, I am paranoid. Would love not to have to worry, but because of my age on a daily basis I get calls about falling down and cannot get up, hip replacement, hearing loss... and it goes on and on. Senior privileges I guess. And my insurance company calls and sends letters to remind me about testing for illnesses that I don't even have.

I even got a call from a doctors office in NYC (I live in MD) just before HIPAA came into effect... I had taken a free scan in my doctors office for bone loss.... The office in NY wanted me to be part of a test. I asked how they got my name and they said in the phone book. At which point I blew.... berated the gal on the other end, called my doctor and complained... He sold out. Information is for sale.. wish it were not true. Sad.

Marp · ‎03-09-2010

@151949 wrote:
All the ancestry DNA tells you is what country your DNA is from. How on earth could that information be used against you on the internet? You people are seriously paranoid.I had my DNA tested years ago to see if I had the breast cancer gene,and I assume that information has been on a computer out there somewhere for about 20 years now.Some how no one used it for any nefarious purpose as yet.

I'll start my reply with your last two sentences. I sincerely doubt that you used a company that publicly solicits customers to have their DNA tested. A medical lab tested your DNA for a specific gene. That is an entirely different situation.

The companies that solicit customers to test for ancestry do not have the constraints that a medical lab does. They are selling ancestry results but there is nothing to stop them from doing full DNA profiles searching for any number of things, nor are there restraints on what they can do with the data they develop.

Since there are no HIPPA protections, all of their data, which is linked to individuals and not just meta data, can be quite valuable to a number of businesses.

As to being used against an individual on the Internet that is a bit of a stretch but since most of these companies post their findings on the Internet the information is vulnerable--that is without even addressing how secure the companies' servers are. Your personal information along with DNA findings can open many avenues of exploitation.

What is good for the goose today will also be good for the gander tomorrow.

151949 · ‎03-09-2010

@september wrote:
@151949 wrote:
All the ancestry DNA tells you is what country your DNA is from. How on earth could that information be used against you on the internet? You people are seriously paranoid.
No, but you are seriously naive.

Did you know that 23andme sold their customer's results to Genome for a study on Parkinson's disease? And it was for a big profit on their part. $60 million comes to mind, but I'll have to google that to know if my memory serves me right.

And how did that do anything to hurt anyone? As a matter of fact it may have helped someone.

Moonchilde · ‎05-23-2010

I'm on Medicare. It isn't likely that at my age I'm going to develop or pop out with some genetic disorder that's a huge shock, or mean I can't get health insurance or life insurance. Whatever *else* someone might want to do with my DNA other than ancestry isn't going to affect me negatively so I really don't care about the medical aspect. But if I was in my 40s and had kids and grandkids, and bought health insurance and life insurance, I might.

However - just like any medical testing, your data is attached to a number, not a name. You are identified only by that number, as far as research. You may be described as a Caucasian female X years old, but that's about it.

Any company that leaked a person's contact information and identity would be in a huuuge heap o' trouble. What they do with statistical data that doesn't have my name attached might just help someone, some day.

Life without Mexican food is no life at all

september · ‎03-09-2010

@Noel7 wrote:
Hi september, your article says those involved DONATED their DNA and health information for research.

@september

Yes, but I believe it was after they paid the fee....and the other stuff was in the fine print, which most people don't read.

It happens...my son was one who used this service.

I used Ancestry.com, which only gives you the info about which countries your ancestors came from. 23andme also goes into the medical background. I'd stay away from that.

you can have this testing done privately. It will cost you more, but your results will stay private.

Karlakaye · ‎03-10-2010

My husband had his DNA profile done by ancestry.com last year. He really enjoys working on his geneaology as a hobby. He gave me the test from ancestry.com as a Christmas gift--think it was on sale for $78 or so including shipping both ways. I am awaiting the results and he, our daughter and I are excited to learn more about my roots! No anxiety here---just interest!

KK

Noel7 · ‎03-09-2010

@september wrote:
@Noel7 wrote:
Hi september, your article says those involved DONATED their DNA and health information for research.

@september
Yes, but I believe it was after they paid the fee....and the other stuff was in the fine print, which most people don't read.

It happens...my son was one who used this service.

I used Ancestry.com, which only gives you the info about which countries your ancestors came from. 23andme also goes into the medical background. I'd stay away from that.

you can have this testing done privately. It will cost you more, but your results will stay private.

********************************

@september

what has been said is that those involved knew what they were doing and agreed to release their information for research. I don't see anything wrong with that. I haven't seen any information that people are suing or claiming they were used. Do you know if anything like that has happened?