Anyone here have an opinion on or have done genetic testing?

[AllyCat]

I've read so much about the big ancestry/heritage type groups selling data and such that I really don't have any interest in doing it. At the moment, I have a family member trying to determine relationship and is asking me to do a test "to help her". The outfit is a private company that does things like criminal cases and paternity. She paid a bunch of money and had them send me a DNA kit after I said I wasn't interested.

Any thoughts about a company like this? I called them and they don't sell information to 3rd parties. But, they told me I could be anonymous after the stuff was sent to my house with my name and address. They said that is now part of the record of the sample. Not exactly anonymous.

Family member is in tears that I won't do this because it is "very important to her" and now not speaking to me.

Feel like I'm being a jerk, but if that ever gets out, I can't exactly just go change the credit card number...if you know what I mean.

Plus, what if they find where the bodies are buried? Wait...just kidding about that last part.

[flying rabbit]

1. Pretty invasive stuff

don't get shamed into it. Of course you are anonymous, until you are not. Family member should get over it, but it seems there is an angle there.

[AllyCat]

2. I've read they can say anything is anonymized, but it isn't that hard to tell who it is.

The company had a one sentence privacy policy and then everything else had to be explained to me by the lady on the phone. I was not impressed. Then she had them send me an email explaining it all, but I am not convinced. What if this company is legit, but goes out of business and an ancestry type of place buys it and then has all the info?

What happens if they DON'T destroy the data after 6 months?

What if an insurance company pays them ENOUGH money to cough up the data so they can figure out some way to not give me life insurance or something?

[flying rabbit]

3. Then don't do it

sounds like you don't want to anyway.

[KarenS]

4. jeeze,,,, now she's not talking to you?? emotional blackmail,,,,

Lots of family secrets can be exposed,,,, My half-sister did this and I gave her massive grief,,,, then someone contacted her with partial matching dna,,,, I just don't want to know this stuff,,,,

[abqtommy]

5. There are many outfits claiming to do DNA testing that are just hustlers so if you do

this go with a company with a good track record for honesty and accuracy.

I've gotten quite a bit of information from www.ancestry.com during the free trial they offer.
Tell your relative to leave you alone and try that. I wish I had relatives that wouldn't
speak to me!

[KewlKat]

6. I've tested with 4 companies, some overseas as learning my roots was important to my

Mother. She was adopted and had many health issues, as do I. After she passed I was able to find her birth father and it helped me fill in some more blanks. Too late to help her but it will help my nephew. I have no one else to test to help me solve the remaining family mysteries, so I can understand your relatives frustration.

I worked for Uncle and had many clearances so I figure they’ve got the goods on me anyway.

If you want to help her, but are still concerned with privacy, perhaps you could notify the company that the test was passed to another family member and ask them to remove your name from the kit that was sent to you. Tell them the purchaser will provide them another name. Then pick a name, take the test and your DNA will be tagged to the fake name?

Just a thought.

[Skittles]

7. that family member is WAY out of line

seriously, it's OK to ask family if they would consider doing it but to actually have the kit sent to you after you indicated you were not interested - tell this gal she needs to RESPECT YOUR DECISION

[happybird]

8. +1

[AllyCat]

17. Thank you. My heart is broken today that she has ended our

Communication because of this.

[Skittles]

19. very sorry AllyCat

you're going to have to hope that she comes to her senses eventually

her actions are very unreasonable indeed, has she had a medical evaluation lately? do you know of others she has interacted with like this?

[AllyCat]

20. No. To both. We just lost our mother and I think this

Is how she is grieving. Just when we need to stick together, she has started this insanity.

[Skittles]

22. she sounds like she needs counseling

can anyone get though to her?

[AllyCat]

26. I dunno. I hope you are right that she comes around.

This sucks. I’m still not doing the test.

[MFM008]

9. I did

23 and me or whatever it told me what I knew, which is our families almost 60% Irish with some English throne in with surprise me is that we were almost 30% German the rest was mixed Scandinavian. Also medical info and the update their information because I gave them permission to so when they have a new test or something I get the results of that even though it may be 2 years later I considered it worthwhile.

[crud]

10. My brother got dna tested

and someone found out they were a close match and contacted him. To make a long story short, as a result...my other brother found out he fathered a baby girl 40 years after the fact and now has great grand children out of nowhere.

[mopinko]

11. i did 23/me, and uploaded to a couple places.

none of this genetic science is worth shit w/o a database. so, i feel like i am contributing to modern medical science. and getting answers for myself.
23 asks you to take surveys and participate in research. they make money off my dna, but they dont share it.

i uploaded to one of the genealogy sites, and found a few cousins including 3 adoptees.

i honestly have no idea how my dna could be used for nefarious purposes.

[AllyCat]

12. Denying life insurance

Health insurers cannot deny you based on DNA. But life insurance CAN. What if they find some new marker and a person has it...now cannot get life insurance?

[mopinko]

14. maybe that person gets a cure instead.

i honestly cant see it. having a marker and dying of a disease are not the same thing.
esp if knowing about the marker could lead to better treatment.

lot of folks out there right now getting colonial penn type policies cuz they are already sick. that market is there if that happens.

[AllyCat]

16. So they should get shitty insurance because a regular life insurance policy

company denied them based on DNA? We can find cures and protect people’s privacy at the same time.

[mopinko]

18. we cant really.

we cant find cures w/o the data.

[AllyCat]

23. They can not share with 3rd party sites.

Pharmaceutical companies are bad enough, but to sell to insurance companies is quite another. This is not a massive practice but there is ZERO regulation of these companies. GINA is toothless in these instances.

[NNadir]

13. I'm actually thinking for the first time of doing it to vote...

...for attention to Barrett's esophagus.

Both my father and my uncle died from cancer that first presented as esophageal cancer. The precancerous condition is Barrett's esophagus.

I have just been diagnosed with it.

I always attributed their cancers - whistling in the dark maybe - to the fact that they were both heavy smokers.

Cigarette addiction is, in fact, a well known risk factor in this cancer, but as I recently found out, there is a genetic component, a gene known as "TP53."

Mutations in this gene raise one's risk of developing this cancer.

The ancestry companies are largely full of shit when they claim you are 23.377% Finnish Sami. They couldn't care less about your origins. Their real business is selling data to pharmaceutical companies. The more a particular gene shows up, the more money they can make by developing drugs to treat its effects if these effects are pathogenic.

There is a high likelihood that I have inherited a problematic version of TP53.

Based on purely epidemiological factors and morphology, I face a less than 1% chance of my Barrett's esophagus advancing to cancer each year. The gene probably raises that risk.

I'm going to die soon enough anyway, but my sons each have at least a 25% chance of inheriting this gene. Getting sequenced is a vote for treatments for my decendents.

[Fla Dem]

15. Ancestry has had my DNA for years. I also completed a number of online surveys.

All my choice.

[Buckeye_Democrat]

21. I've done it and didn't care, but I respect your concerns.

Sheesh, I'd never send a DNA kit to an unwilling person!

Harvard did full-genome sequencing on me and my family years ago, to help identify the faulty gene responsible for an extremely rare genetic condition that affected some of us, so I figured the information was already "out there".

Most of the commercial sites only check a tiny fraction of the DNA, the SNP's that are more likely to differ among people around the globe.

[AllyCat]

24. Harvard would be a study and medical information.

They are governed by different laws. Much safer.

[Buckeye_Democrat]

25. You're probably right, but it still made it easier for me.

23andMe never found any genetic health issues for me when I ordered their "health" test, but they obviously weren't going to bother checking for an incredibly rare genetic condition.

Edit: I think it was rude for the person to send you a DNA kit after you expressed any reluctance.

[Wicked Blue]

27. I did 23andMe hoping I would find some relatives

but the nearest they found were some 3rd cousins, as well as 4th, 5th etc.