I work in a tissue bank at a well known research hospital. We collect samples for research purposes. The consents that patients sign explicitly say that any research results (such as a newly discovered gene mutation) won't be shared with the patient, but we do keep a link between patient and sample so we can review a patient's medical history. (The results don't go in the medical record because they're done in a research setting, not a clinical lab.) Some of the people that do research on these samples are from external, for profit companies.
(Clinical gene testing, like to determine if you carry something like BRCA when you have a related cancer or to determine the mutations in your tumor, does go in the medical record.)
I appreciate that 23andme allows consumers to have the raw data. I also get why we can't share data to a specific patient about a research result. I think people *should* participate in research studies, but I also would carefully read consents. We're a cancer center but we specifically ask if patients consent to having their samples used for unrelated research, like alzheimer's disease (an example used in the consent).
I quite honestly have the same concerns about a data breach at a hospital vs. a company. Because many people (drug companies, other medical offices) still use fax machines and sharpies to redact records.
In terms of GINA and future DNA related concerns, that I get. But as I've said, I already opted in to carrier testing for IF reasons and the damage for me is already done.
Post by yourmother on May 14, 2019 14:08:23 GMT -5
I already fucked up and participated in 23&Me. I'm paranoid now.
That's what I get for being breezy.
It has been educational though to see what parts of the world my ancestors were from. Also, I have over 1,100 connections and it's cool to see where everyone lives.
Can you expand on this, because I don't have the same opinion.
Do you feel the same about companies like Counsyl, GeneDX, etc?
I’m no legal expert but in every article I read about *consumer* DNA tests, there are very very few protections of our genetic data. One article I read stated that there are more legal protections for felons that have had their dna taken than there are for the public.
Well, yeah, those laws are there to protect those accused not the innocent. Of course there should be stricter guidelines of mandatory dna testing of a "felon" verses a voluntary test.
My mom and her sister did the Ancestry.com test purely for origin curiosity and we've since communicated with two grown women who are their nieces. Their now deceased brother (my uncle) fathered two children with two separate women that no one ever knew about - they are both lovely and so was he but wow. So... I'd suggest being prepared for whatever the test may reveal or connect for you and your family.
This happened in my family as well except the newly found cousin was not happy to be found and was not aware of her parents situation until now ... so there’s always that possibility.
Post by liverandonions on May 15, 2019 0:07:20 GMT -5
My best friend did it and found the daughter her mom had given up for adoption. The family knew about this but they got to meet her. They’ve lived in the same town their whole lives and now she’s just another part of the family. It’s awesome.
I did 23&me with the health stuff and so did my husband. My main pseudo surprise was that I’m part Swiss and not German...but I had actually already figured that out just prior by doing my ancestry tree. My Mom is “100%” Irish and I came back 70% Irish/British so that was no surprise. I had a tiny bit Ashkenazi Jew which I think is my Dad’s side. So yeah I think it’s very accurate on ethnicity. My family tree traced back to Mayflower on my Dad’s side & lots of Puritans/settlers— that was on Ancestry family tree and was pretty interesting. As far as health, well I’ve had zero things show up which actually surprised me. I plugged raw data into Promethese & that was interesting and pretty spot on. I find it all fascinating. My husband had a bit of a surprise in that he has some African ancestry. He did have a couple things on the health profile show up but nothing earth shattering. Neither of us found anything much on relatives, they were all fairly distant. My adopted brother found his bio family via dna on ancestry. So that actually was probably the biggest impact dna testing has had on our family.
Well, my DNA collection kit came in the mail yesterday and I sent it back out this morning. I've also completed a lot of the questions on their website, apparently I've answered more questions than 81% of 23andMe participants. Clearly I'm not worried about any of the repercussions of doing this.
Post by deanlicker78 on May 20, 2019 11:39:30 GMT -5
I know this thread is a couple of days old but, oh well.
I did an Ancestry test and found my real Dad. I always knew my mom's husband wasn't my real Dad but had adopted me after they married. My mom would never tell me anything about my real Dad so I never even knew his name.
I emailed him and he was thrilled, he had tried finding me years earlier and my mom lied to him and said she'd been wrong and he really wasn't the father. She is a pretty selfish person, she had no qualms about lying.
We've been emailing/texting for a while now and met a few times. He's a great guy and we get along like peas and carrots. So it's been a pretty happy story so far.
I know that you all have been waiting with bated breath for my test results LOL
So far, no crazy ancestry matches, just a bunch of 3rd and 4th cousins, but I haven't dug in to it any further than that.
My ancestry showed almost exactly what I was expecting, British Isles and France/Germany (my family is from Alsace Lorraine) but I was surprise to see some results that included Scandinavian and Italian (which is funny because my 1/2 Italian sister showed 0% Italian).
I did the health DNA as well, and wasn't surprised to see that I am a carrier of the variant for the Macular Degeneration Gene as my Grandmother had that and I also have the variant for Hereditary hemochromatosis which is when the body absorbs too much iron. I don't seem to have this issue as I've been Dx Anemic in the past, but it's good to know as there's a chance that I passed it on to my kids. I have a slightly increased risk for Late Onset Alzheimers which is interesting, though I know of no immediate family members who were ever diagnosed with this. Lastly, I have an increase risk of Celiac Disease. I've never tested positive for Celiac, but Gluten makes me really sick, even my doctor said that the tests aren't 100%, so there's that.
Anyway, that's as far as I've gotten digging in to my results, but just thought that I would share here.