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Fri Jun 7, 2019, 08:58 AM

 

Remember all those posts on DU promoting genetic testing?

A while back, it seemed like every couple of days there was a post on DU pimping those home DNA test kits. My favorite one was the idiot who was claiming that people who don't get them are really cowards, because they are afraid it will show undesired ethnic origins (as if all people didn't have a common ancestry anyway).

Well, how on earth did I manage to miss this, and I apologize if it was posted before, but it turns out that you have all been paying for the privilege of providing data to pharmaceutical companies:

http://time.com/5349896/23andme-glaxo-smith-kline/

A Major Drug Company Now Has Access to 23andMe’s Genetic Data

Consumer genetic testing company 23andMe announced on Wednesday that GlaxoSmithKline purchased a $300 million stake in the company, allowing the pharmaceutical giant to use 23andMe’s trove of genetic data to develop new drugs — and raising new privacy concerns for consumers.

The “collaboration” is a way to make “novel treatments and cures a reality,” 23andMe CEO Anne Wojcicki said in a company blog post. But, though it isn’t 23andMe’s first foray into drug discovery, the deal doesn’t seem quite so simple to some medical experts — or some of the roughly 5 million 23andMe customers who have sent off tubes of their spit in exchange for ancestry and health insights.


That was, incidentally, the play all along. Charge consumers money to fund your establishment of a huge DNA database, and then sell it off to interested purchasers. It pays at both ends.

https://www.wired.com/story/23andme-glaxosmithkline-pharma-deal/

23andMe's Pharma Deals Have Been the Plan All Along

But 23andMe, with its hybrid model, has been commodifying health and genetic data for years as it wades further into the field of drug discovery. In 2015, Forbes reported that the company had inked its first pharmaceutical company deal with Genentech, for $10 million up front, and up to $50 million if its data turned out to be useful for developing Parkinson’s treatments. Pfizer signed a data-sharing agreement of its own shortly after. That was back when 23andMe had data from only 650,000 consented individuals in its proprietary database. Its critics were unsure of the value of that information, self-reported as it was (and still is). But as the database has grown to the millions, differences in how customers interpret survey questions matter less and less to the company’s potential research partners, according to Spector-Bagdady.

“The hypothesis of this company was to circumvent medical records and just self-report,” Wojcicki told a room full researchers at an event on 23andMe’s campus in May. “Anyone can go get genomes. What’s really hard is phenotypic data.”

To get that kind of health and behavioral information, 23andMe is continually pushing surveys out to its customers. A few questions here, a few questions there; it’s kind of like going on a first date every time you log on. And people love talking about themselves. “We specialize in capturing phenotypic data on people longitudinally—on average 300 data points on each customer,” Wojcicki said. “That’s the most valuable by far.


And, please, don't even bother to say "But I sent mine to Ancestry.com" and try convince me that giving your DNA to the Church of Jesus Christ of Latter Day Saints is a better idea.

https://www.huffpost.com/entry/ancestrycom-medical-research-juggernaut_n_7008446

Ancestry.Com Is Quietly Transforming Itself Into A Medical Research Juggernaut

87 replies, 5797 views

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Reply Remember all those posts on DU promoting genetic testing? (Original post)
jberryhill Jun 2019 OP
Celerity Jun 2019 #1
lagomorph777 Jun 2019 #47
Siwsan Jun 2019 #2
jberryhill Jun 2019 #6
Siwsan Jun 2019 #11
mopinko Jun 2019 #3
lostnfound Jun 2019 #12
SWBTATTReg Jun 2019 #38
BannonsLiver Jun 2019 #49
hatrack Jun 2019 #4
Sherman A1 Jun 2019 #7
2naSalit Jun 2019 #80
Turin_C3PO Jun 2019 #5
Maru Kitteh Jun 2019 #44
democratisphere Jun 2019 #8
TheBlackAdder Jun 2019 #9
Siwsan Jun 2019 #13
TheBlackAdder Jun 2019 #15
jberryhill Jun 2019 #16
ecstatic Jun 2019 #10
hlthe2b Jun 2019 #14
Mariana Jun 2019 #79
lark Jun 2019 #17
NutmegYankee Jun 2019 #18
paleotn Jun 2019 #50
NightWatcher Jun 2019 #19
Afromania Jun 2019 #28
appalachiablue Jun 2019 #20
LuckyCharms Jun 2019 #21
Quemado Jun 2019 #24
LuvNewcastle Jun 2019 #37
KY_EnviroGuy Jun 2019 #22
Scalded Nun Jun 2019 #23
Rabrrrrrr Jun 2019 #25
LuckyCharms Jun 2019 #26
Croney Jun 2019 #27
greatauntoftriplets Jun 2019 #29
jberryhill Jun 2019 #31
GusBob Jun 2019 #39
jberryhill Jun 2019 #43
GusBob Jun 2019 #45
jberryhill Jun 2019 #46
GusBob Jun 2019 #48
jberryhill Jun 2019 #59
GusBob Jun 2019 #62
Blue_true Jun 2019 #72
Blue_true Jun 2019 #71
Blue_true Jun 2019 #70
Ms. Toad Jun 2019 #75
Blue_true Jun 2019 #76
Ms. Toad Jun 2019 #78
Blue_true Jun 2019 #81
Ms. Toad Jun 2019 #83
Blue_true Jun 2019 #84
Ms. Toad Jun 2019 #87
jberryhill Jun 2019 #58
greatauntoftriplets Jun 2019 #61
Blue_true Jun 2019 #68
greatauntoftriplets Jun 2019 #69
Hotler Jun 2019 #30
empedocles Jun 2019 #32
Blue_true Jun 2019 #73
Major Nikon Jun 2019 #33
RobinA Jun 2019 #34
jberryhill Jun 2019 #36
RobinA Jun 2019 #63
3Hotdogs Jun 2019 #35
asiliveandbreathe Jun 2019 #41
jberryhill Jun 2019 #42
3Hotdogs Jun 2019 #56
MaryMagdaline Jun 2019 #82
asiliveandbreathe Jun 2019 #40
Ms. Toad Jun 2019 #64
hughee99 Jun 2019 #51
gtar100 Jun 2019 #52
jberryhill Jun 2019 #53
CanonRay Jun 2019 #54
jberryhill Jun 2019 #57
CanonRay Jun 2019 #60
Hekate Jun 2019 #55
canetoad Jun 2019 #65
klook Jun 2019 #66
Blue_true Jun 2019 #67
Raine Jun 2019 #74
still_one Jun 2019 #77
DonaldsRump Jun 2019 #85
Hugin Jun 2019 #86

Response to jberryhill (Original post)

Fri Jun 7, 2019, 09:01 AM

1. this whole thing is probably not going to end well

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Response to Celerity (Reply #1)

Fri Jun 7, 2019, 02:24 PM

47. I think we'll find that drug development is one of the more benign uses this data is put to.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 09:25 AM

2. I wouldn't call people who utilize these services idiots. Perhaps they are naively curious.

And I state that as someone who has been alarmed about these genetic testing sites, from the onset. I understand people's curiosity, most especially someone who is adopted and has no data on their birth parents.

But, for me, it's not worth the future risk. I know where my family came from. I know I'm a fine blend of eastern and western European blood lines. And, from what was reported in a CBC documentary, that's really about the factual extent of what these sites can report. The rest of the 'drill down' is calculated from statistical and guess work. I value my genetic privacy more than to pay for a little guess work that will end up being sold to the for profit medical cartel.

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Response to Siwsan (Reply #2)

Fri Jun 7, 2019, 09:34 AM

6. I was calling one particular poster an idiot

 

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Response to jberryhill (Reply #6)

Fri Jun 7, 2019, 09:51 AM

11. Oh, ok. But still. People get swept up. I kind of feel sorry for them.

They are being sold a story, and it might come at a great expense. I've been accused of having a 'tin foil hat' belief, about these services. That's fine. Sometimes that tin foil comes in handy.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 09:25 AM

3. i have no problem w this, myself.

 

i did it in the first place out of scientific curiosity, mostly.
i, and a couple of my kids, are medical mysteries. we have autoimmune abnormalities that are not associated w known diseases, but we are sick nonetheless.
i hold high hopes for the transformation of health through the science that is currently evolving. but it is worth nothing w/o wide, wide data.

you can opt out of sharing, you can opt out of surveys.
nobody is hiding anything.
you can choose to participate in clinical trials. or not.
a lot of people want to join those trials, cause they have no other hope.
if they came up w one for fibro, i would be right there.

i believe in science, and i like that i can do a tiny part.

ymmv

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Response to mopinko (Reply #3)

Fri Jun 7, 2019, 09:52 AM

12. No safeguards against discrimination

I believe in science too, and agree with most of what you said. Greed overwhelms is, however, and here are a few facts: 1) protections against pre-existing conditions are on the chopping block, 2) background checks for employment screens could easily begin to include genetic information, 3) can’t count on the courts to protect us, 4) big data can now take a set of data points and reasonably tie it to one particular person — even if you personally did not submit your DNA, 5) far less likely, but I’ll mention it anyway — a truly psychopathic future leader could do twisted things with this database (master race, cleanse the population of deviants, etc.)

We are well on the way to a Darwinian, dystopian, inhuman future.

“Nobody is hiding anything.” is the only thing I don’t agree with. They will monetize this in a way that allows basic humanity to be cast aside.

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Response to lostnfound (Reply #12)

Fri Jun 7, 2019, 12:25 PM

38. You list a big chunk of my concerns, in that with all of the electronic break ins of our online ...

data that we've seen in today's world, and the nefarious uses this stolen data is used for (stealing money for the most part, industrial secrets, etc.), I'm concerned that the courts, government, and businesses won't be able to protect our data (DNA). I laugh when I hear anytime of the government's ability (zero ability) to protect us from online negative activities. Companies too, such as FB, don't seem to be interested in this type of business, all they care about, is accessibility to their application, and nothing else (to be fair, cross checking the literally hundreds of millions of online clients would be a daunting task for anyone).

Besides being really difficult from a internet network perspective to stop nefarious activities (must ID the suspect traffic, must coordinate w/ multiple network partners should the internet traffic transverse multiple data networks, and then finally knock the offending traffic offline), and all of this activity needs to be coordinated so this process is very time consuming and expensive. There are technologies out there that would make breaking into an online presence more difficult, but these are expensive, and unless we have a massive enough break-in for users to decide to start paying more money for a secure access to the online world, I don't expect to see this anytime soon.

One thing to note, that if nefarious entities are so hard to track online, then we (on the other side of the fence) are protected somewhat (we're (or can be) hard to track online too).

Who knows what new technologies could be developed over the next few years/decades down the road, with unheard of capabilities and abilities that we haven't even thought of today?

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Response to mopinko (Reply #3)

Fri Jun 7, 2019, 02:46 PM

49. A lot of people don't even use their real names

Just a bunch of tin foil hat nuttery and Luddite nonsense.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 09:30 AM

4. Surprise, surprise, surprise . . .

Not.

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Response to hatrack (Reply #4)

Fri Jun 7, 2019, 09:35 AM

7. Yup

I smelled something bad from the get-go and if they want my information they can pay me for it.

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Response to hatrack (Reply #4)

Sat Jun 8, 2019, 11:15 PM

80. +1

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 09:30 AM

5. I don't know.

I still don’t regret getting my DNA tested. If a pharmaceutical company uses it for research, so be it. Although I suppose they should have obtained permission since it bothers some people.

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Response to Turin_C3PO (Reply #5)

Fri Jun 7, 2019, 01:07 PM

44. You have to "opt in" with 23&Me, and they make the process very clear. Not only must you

opt in, they make sure it is a several-step process, and frequently repeated. It's certainly not a blanket, one-click action that could ever be done by mistake.

I consider their model to be very cautious and responsible.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 09:38 AM

8. Privacy?

What privacy. Wait till the health insurance companies get a hold of this data then adjust their prices accordingly.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 09:44 AM

9. TOS Terms Can Change Too. Just wait until DNA sold to employers, insurance companies, etc.

.

You just don't fuck yourself. . . you fuck every member of your family.

.

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Response to TheBlackAdder (Reply #9)

Fri Jun 7, 2019, 09:53 AM

13. Precisely

I think the only person in my family to do this is a cousin's daughter.

Years ago, both sides of my family constructed a family tree, the old fashioned way. We know enough from those documents.

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Response to Siwsan (Reply #13)

Fri Jun 7, 2019, 09:57 AM

15. We had genetic testing for pregnancies, but those were bound by HIPAA restrictions.

.

These private DNA firms are not prevented from later disseminating your information with a simple TOS change.

.

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Response to TheBlackAdder (Reply #15)

Fri Jun 7, 2019, 10:01 AM

16. That's what's brilliant about this - it's and end run around HIPAA

 

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 09:51 AM

10. In one of the pimping threads, a wise DUer (maybe you?)

explained all the issues surrounding the (almost) completely unregulated genetic testing industry and it stopped me from doing it. I also warned friends and family against doing it as well, thanks to that post.

It sucks, because I'm really curious about my background, but I just can't do it without strong regulations in place to protect consumers. Even if I shrugged off concerns regarding my own privacy, my family's privacy could also be compromised in some way.

This topic is one of many that Congress has failed to address because rethugs keep trying to take us backwards and not forward.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 09:57 AM

14. LDS already has our non-DNA data going back centuries, so they can baptise our dead souls..

They got in big trouble doing so with Jewish Holocaust victims, but ya know...

23andme is still the worst.

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Response to hlthe2b (Reply #14)

Sat Jun 8, 2019, 11:01 PM

79. LDS hasn't stopped baptizing the dead, I assure you.

I'm distantly related, on my father's side, to one of the early big shots in the LDS. Every relative who's deceased has been posthumously Mormonized. It'll happen to me, too, when the time comes.

At least as religious rituals go, baptizing dead people by proxy is about as harmless as it gets. The more time and money they spend doing that, the less they have to oppose progressive legislation, and do other things that negatively affect living people in the real world.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 10:13 AM

17. So many people I know are into this.

I love talking to my grandparents & their siblings and cousins about the family past, but just never had the desire to pursue this more formally. At one point my grandmother started working on the family tree and wanted me to take over, but she became brittle diabetic and nearly comatose sp it got dropped. I love the family stories and those are good enough for me. Now this comes up - uggh. I'm glad I never participated as I have a very rare birth defect (1 in 3 million have it) and don't really care for them to use my data for their profit.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 10:15 AM

18. I used 23&Me knowing specifically they intended to do this - they said so right up front.

One of the things you answer is questionnaires on health issues, with the clear intent to identify trends in the DNA profiles. I knew they were using this for research and that they would profit from that and I was OK with that because discoveries of new conditions or medicines that help future generations is acceptable to me. People are paranoid that someone might use the DNA to discriminate, but every single time you get a blood test drawn your insurance company has access to your DNA if they wanted it. This company does not pass on who the DNA belongs to, just the list of potential health issues and and DNA code for medical research.

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Response to NutmegYankee (Reply #18)

Fri Jun 7, 2019, 03:07 PM

50. Bingo. The key being blood draws

With cheap, fast sequencing, one’s genome is no more safe than personal info from doing virtually anything on the internet. I knew that before doing 23 and Me and figure if it leads to new and better treatments, then so be it. It only told me 1 or 2 things I didn’t already know from family lore, but I now know I’m not carrying any really nefarious genes. My Y is exactly what I thought it was. My mitochondrial is mildly.interesting, but not a huge surprise. Now pharma knows enough to clone me, but a lot of folks would say that’s not a good idea.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 10:17 AM

19. First they'll get the data y'all are paying to give them, then they'll sell it

I know that it's Scifi, but go watch Gattaca with Ethan Hawke. It's about genetic testing and predisposition to illness or supposed weakness dictating what jobs you can get and what your status in life will be limited to.

We are the only data that matters to corporations. Our info will be sold to everyone and used by everyone.

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Response to NightWatcher (Reply #19)

Fri Jun 7, 2019, 11:37 AM

28. The entirety of our future begins as someones fiction.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 10:23 AM

20. I caught a fews mins. of the head of 23andme being interviewed,

Anne Wojcicki. She said something about her husband (Sergey Brin of Google) having Alzheimers on both sides. When asked more about the topic of this OP she became nasty and exploded, 'if people don't feel comfortable using the test, then don't do it'!

Wiki, After graduating, Wojcicki worked as a health care consultant at Passport Capital, a San Francisco-based investment fund and at Investor AB. She was a health care investment analyst for 4 years, overseeing health care investments, focusing on biotechnology companies. Disillusioned by the culture of Wall Street and its attitude towards health care, she quit in 2000, intending to take the MCAT and enroll in medical school. Instead, she decided to focus on research.

In 2006, she co-founded 23andMe with Linda Avey. 23andMe is a privately held personal genomics and biotechnology company, based in Mountain View, California, that provides genetic testing. The company is named for the 23 pairs of chromosomes in a normal human cell. The company's personal genome test kit was named "Invention of the Year" by Time magazine in 2008.

> From 2015, the FDA started to give approval to 23andMe's health-related tests, including risk from cystic fibrosis, sickle cell anemia, certain cancers, Alzheimer's, Parkinson's, and coeliac disease. In 2018, 23andMe entered into a four-year collaboration with GlaxoSmithKline to develop new medicines. https://en.wikipedia.org/wiki/Anne_Wojcicki

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 10:25 AM

21. I've never participated in this testing...

and never will.

I've always feared where my DNA information might end up.

This is kind of the same reason I kick myself daily for ever joining facebook. However, I did eventually see privacy problems coming to light, and as a result, I left facebook years ago.

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Response to LuckyCharms (Reply #21)

Fri Jun 7, 2019, 11:22 AM

24. I agree with you 100%. Furthermore, I don't recommend anyone getting their DNA tested...

because there are too many pitfalls:

https://www.investors.com/politics/commentary/dna-testing-kits-risks-privacy/

1. The results are often inaccurate.

2. Commercial DNA databases are vulnerable to hacks.

3. Your genetic information could be sold to the highest bidder.

4. Your genetic information is not anonymous.

5. Your genetic data can be used against you. Federal genetic privacy laws do not apply to life, long-term care, or disability insurers. These companies are legally permitted to access genetic testing data and charge people higher prices or deny coverage based on their findings. Ellen Wright Clayton, a lawyer and Vanderbilt professor, told tech publication Gizmodo that existing law "actually provides very little protection" against this sort of discrimination.

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Response to LuckyCharms (Reply #21)

Fri Jun 7, 2019, 12:20 PM

37. I made the mistake of joining Facebook, too, but it didn't

take me long to get disgusted and leave. I wouldn't get my DNA tested unless my doctor found it absolutely necessary, and even then I would have to be assured it would be kept private. People don't have any privacy anymore, and corporations have all the rights.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 10:28 AM

22. K&R. Thanks, jberryhill. Bookmarked.

KY........

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 11:18 AM

23. They'll probably find a way to get mine at spome point with all the nasty tools at their disposal

But, as I said way back when this shit all kicked off...I'll never pay for the privilege of giving it to them.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 11:26 AM

25. I have a difficult time understanding how medical research is a bad thing.

Much ado about not a whole lot, really, as far as I'm concerned.



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Response to Rabrrrrrr (Reply #25)

Fri Jun 7, 2019, 11:30 AM

26. Until "Health Companies", otherwise known as...

Medical Insurance Companies, use your DNA data to jack up your premiums or effectively deny you coverage for specific procedures by making you jump through endless approval hoops.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 11:32 AM

27. Ok. I'm not surprised. It's too late for me to request that Ancestry return my spit,

but I wish I didn't now know of a Trumpster half-brother I never knew I had. 😝

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 11:43 AM

29. I have an extremely rare autoimmune disease.

It affects one in one million people and causes open wounds -- in my case, it's on my right ankle. There are no good cures for it because it's so rare that there's no money in creating a drug to cure it or even cause a remission.

In four years, I've seen maybe 15 doctors about this. I've gone through a variety of treatments for this -- ointments, skin grafts, two months in a nursing home with a wound vac attached to me, more prescriptions than I can count, maggots to clean the flesh, painful debriding, Remicade infusions -- in an attempt to make this go away. I've had an extremely painful staph infection in the wound. And insurance won't pay for the Remicade, which costs about $24,000 per infusion every eight weeks. Fortunately, my doctor arranged with a foundation to provide this to the hospital, and I pay only about $1,500 per infusion. That's a lot of money and it's rapidly depleting the retirement money I'm living on. There's also the anemia that I've had because of another medication for this that negatively impacts the hemoglobin level. When it was down to 7.4 in March, I came thisclose to needing a blood transfusion. Currently, my hemoglobin has been going down again.

Then there's the impact it's had on my life. Because I'm not allowed to drive (and may not ever be able to do it again because of scar tossie), I'm mostly homebound. Uber and cabs cost money and I have to limit my spending because of the various costs -- Remicade, other medications for it, bandaging materials.

I could go one about this a long time, but will spare the rest of the gory details.

But if some pharmaceutical company wants to use any information they can glean from my Ancestry DNA test to someday find a cure for this thing, they're welcome to it.

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Response to greatauntoftriplets (Reply #29)

Fri Jun 7, 2019, 11:46 AM

31. Until your genes become their intellectual property...

 

...and then the licensee of your genetic information can actually use their rights in your genes, which you paid to sign away, to prevent others from competing or conducting research into your disease.

In fact, its worth it for the owner of proprietary treatments for your condition to get the rights to your genetic data and actually just sit and do nothing with it, in order to maintain their market.

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Response to jberryhill (Reply #31)

Fri Jun 7, 2019, 12:33 PM

39. How much would a cure be worth you reckon?

Lets play pretend: Say they find a cure for a plethora of genetic conditions from Downs Syndrome to Macular Degeneration from genetic testing. The cure or a prevention could be worth billions for each condition.

By my reckoning this sort of testing or research over broad swaths of populations thru generations cant be done for diseases in a clinical or real world setting. I know of one-The Beaver dam Eye Study- that was groundbreaking in eyecare

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Response to GusBob (Reply #39)

Fri Jun 7, 2019, 12:59 PM

43. And, furthermore

 


Let's say that cure was based on government funded basic science which you paid for, conducted at public educational institutions which you pay for, attended by your children whose tuition you pay for, and utilized your genetic testing data which you also paid for.

Can't afford the treatment? Well, then go die.

Next!

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Response to jberryhill (Reply #43)

Fri Jun 7, 2019, 01:58 PM

45. In your hyperbole, you are failing to see the broader picture

I'm the kind of liberal, and the kind of health care provider, who believes in bringing hope and care to those that are suffering.

And I am a huge believer in research. 75% of the things I learned decades ago are obsolete from new advances

millions of people, hundreds of millions of people, have benefitted from the BDECS, conducted by my alma mater The University of Wisconsin BTW. And one of its effective treatments is sold today at Wal Mart, OTC.

These are not all fatal conditions BTW, so your "go die" comment is way off base. Peoples' lives will be improved, I am certain of it

And the bigger picture I am thinking the cure lies in detection and prevention which is not costly. Their are other cures in gene replacement and stem cell which need to be studied

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Response to GusBob (Reply #45)

Fri Jun 7, 2019, 02:21 PM

46. Okay well, my picture is different

 


I'm the kind of IP attorney who has seen how some of that works, and I'm also the kind of patient who was not conscious when a doctor chose a substantially more expensive and difficult to change drug once it is started, than more reasonable alternatives, and who coincidentally receives a lot of perks from the manufacturer (now that doctors have to report those to a searchable database). I'm also the kind of patient who had been uninsured for a good deal of time due to a pre-existing condition, and had a very hard time even getting access to health care providers, whether liberal or otherwise.

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Response to jberryhill (Reply #46)

Fri Jun 7, 2019, 02:40 PM

48. Yes of course its all a matter of perspective

You are concerned with privacy issues for everyone and your own medical issues. I am concerned with broader epidemiological issues. Of course we deal with privacy concerns all the time, but to me for research and development they should take a back seat. I reckon someone with say, ALS, and their family members as well, don't consider privacy concerns that much. They more likely worry about their children or grandchildren coming down with the condition.I could be wrong

You got me thinking: perspective, the legal vs medical view. I don't know, you may rely and refer on your old law books when needed. My old textbooks, well, they are laughable, or shameful, in their obsolescence

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Response to GusBob (Reply #48)

Fri Jun 7, 2019, 07:43 PM

59. My perspective is that people should be told

 


Your perspective is that telling people about all the wonderful things being done with their data is not a good idea. Why you’d prefer they not be told, I don’t know.

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Response to jberryhill (Reply #59)

Fri Jun 7, 2019, 10:11 PM

62. There' s a quote from Mosquito Coast, Paul Theroux

Kinda my mantra I think it goes like this:

God has left the world an incomplete place, its is mans job to understand how it worked, tinker with it and to finish it

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Response to GusBob (Reply #45)

Sat Jun 8, 2019, 09:33 PM

72. The biggest money is in medicines that has cousins that can be sold OTC.

And none of it has to be so expensive that people can't afford the medicines.

Big drug companies want drugs for illnesses that affect as many people as possible, that is how they make money, selling to large numbers of people. The other poster failed to explain WHY a big drug company would screw itself by reducing 30 million consumers to 500,000 by charging outrageous prices (yes, they will inflate the prices, but it is self-defeating for them to gouge people's eyeballs out). The jacked up drug prices are coming from small companies or hedge funds that got their hands on medications that affect a comparatively small number of people, so they unethically over charge.

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Response to GusBob (Reply #39)

Sat Jun 8, 2019, 09:25 PM

71. A decent pipeline of medications could be worth up to $1 Trillion dollars,

depending on what medications are in the group. For example, if a person or company come up with a group of medications that cures cancer and a host of neuro-muscular and nervous system disorders, that group could be worth well past $1 trillion dollars due to the extreme value of each medication.

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Response to jberryhill (Reply #31)

Sat Jun 8, 2019, 09:21 PM

70. You are a technical person and an attorney.

You should understand how misleading your first paragraph is. I have done patents, you just CAN NOT claim something as exclusive that anyone else applying straight forward methods can come up with. An invention that will stand court challenges has to be unique and of a nature that others could not have reasonably replicated if they didn't somehow get ahold of non public information from the original inventor. There have been thousands of not hundreds of thousands of papers written on the human genome, there is not much unique about it, what is unique is how genes interact, but figuring that out takes a great deal of unique and focused effort, and would qualify for patent protection, but someone else could not be barred from using the same genome information to come up with a competing remedy. I am working on a couple of inventions now that thousands of people could try to make alternatives for. But there is a twist, I realize that only certain combinations of ingredients in specific rations give the results those people desire, so I could use that information when applying for patents and anyone that copy it will be sued by me and it would be fairly straight-forward for me to prove that they used my innovations to get their products.

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Response to Blue_true (Reply #70)

Sat Jun 8, 2019, 10:15 PM

75. You seem to be misunderstand patents.

When you patent an invention you are essentially trading a brief monopoly for telling the world exactly how to make your invention. If, during that brief monopoly, someone else makes or sells your invention, you have the right to stop them. Whether the infringer could have made your invention without knowledge from you is entirely irrelevant (since making that knowledge available for the entire world to see is the price you pay for a brief monopoly).

You'd be easy pickins for any of the invention companies that charge an arm and a leg and obtain a useless patent. It's far easier to obtain a patent on "certain combinations of ingredients in specific ratios" than less specific invention - because no patent attorney worth her salt would ever limit the application to such a narrow invention (meaning you are less likely to find prior art for a very narro invention that would prevent patenting). It also makes the patent worthless, since all anyone has to do to avoid your patent is to read your patent (which is public information - the price of patenting it) and make small non-obvious change to it.

#cuereplayofinitialpatentconultationwithgazillioninventors

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Response to Ms. Toad (Reply #75)

Sat Jun 8, 2019, 10:28 PM

76. The narrow window is the ONLY way that the products perform as desired.

A patent can be so broad that it is fundamentally useless in the face of truly good patent Attornies (not people that believe they are). The narrowness of the windows that I found ARE what makes the inventions valuable, and that is quite common in many patents.

Let me make a point, I have worked on these ideas for a few years AND I have gotten patents, I am no rube that some con can take advantage of.

I really don't understand why you even mentioned the limited exclusivity window, anyone who has even gotten a patent would know that when I said "sue", I was alluding to that protection.

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Response to Blue_true (Reply #76)

Sat Jun 8, 2019, 10:43 PM

78. I am a patent attorney With more than a decade of experience.

The focus of your post suggested you believe secrecy is an element of patent protection - the infringer could not have made your invention without copying your invention. The source of an infringer's inspiration is completely irrelevant - whether they came up with the exact same invention by copying your publshed patent - or completely on their own makes absolutely no difference because - as I noted - the price of a monopoly is that you tell the world how to practice your invention. But whether they copied it from the patent, or invented it on their own, it is still infringement during the period of monopoly.

As to breadth v. narrow - Narrow patents are much easier to obtain (no prior art that addresses the range in that detail), and much less lucrative since they are so easy to design around. It is, literally, how invention mills work. Crank out very narrow patents because there will not be any prior art that discloses the very narrow range covered by the application they are drafting, then bail before the patent owner discovers the flaw.

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Response to Ms. Toad (Reply #78)

Sat Jun 8, 2019, 11:26 PM

81. I am a research and development engineer with 30+ years of experience.

I have worked with patent attorneys with two to three times your level of experience.

If what you say about secrecy not being of value, then patent Attornies in the large company that I worked for telling me to date and summarize my development logs maybe was something that wasted my time, but I know that it did not waste my time.

So, you are a patent attorney and I have worked with a number that have a lot more experience in the very tough technology field where just having one component that makes an assembly function in a particular way HAS been patented and upheld.

I went off to do something else and thought about your making a patent broader statement. That is not necessary in some cases where a product can only be cost efficient in one zone. A person may make something that works just as well, but if it costs two to three times as much, what is the point for them. In the two situations that I mentioned, I went back and did detail studies of my development logs and experiment results and saw that only a specific range of making product works in a cost effective manner, someone can make a competing product in another range, but I would have a cost advantage as. It really doesn't matter if theirs works as well, it only matters if theirs is clearly superior, which certainly is possible, I am an engineer not God. I have enough development experience to know that nothing works only at an exact number, that is why I researched and tested the tolerances around what I produced and as a result, I know what to claim and the tolerances that I need to cover when making that claim. Edit: if anyone comes up with something within my tolerance, then the case comes down to the strength of my development logs versus any they claim to have created.

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Response to Blue_true (Reply #81)

Sun Jun 9, 2019, 12:53 AM

83. I didn't say documentation of your invention was a waste of time.

The focus of your initial post was that you could sue somoene because they could only have gotten the information from intimate knowledge of your patented invention. What matters as to patents is not where the infringer got the information, but that the infringing invention falls within the claims of your patent, which is also why narrow patents are less valuable.

Documenting your invention an entirely different issue. As to patenting specifically, documenting your invention is important - as is documenting the dates of disclosure. But neither have anything to do with whether or not someone is infringing your patent. They have to do with whether your patent is valid - the timing of public disclosure relative to the filing of your patent application can critical in defeating an attempt to invalidate your patent. It is also quite likely your company is not only protecting its intellectual property by patents - but also as trade secrets (and if it is software by copyrights). Each of those cover different aspects of intellectual property - and knowledge of your intellectual property is critical to a claim copyright infringement - and relevant as to trade secret infringement.

If your patent attorneys are competent, they are writing the broadest claims they can (even if you tell them it works best, or cost-effectively - in a narrow range). We often anticipated where inventions were headed in our clients' fields, and packed the applications with broad descriptions that were frequently useful as prior art when inventors from competitors were (as often happens in a packed industry) thinking along the same lines.

As to your specific example, you don't want your IP protection to cover merely what works best - or at the cheapest price. You want to prevent your competitors from sticking their toes into your field at all (even if they are willing to spend the money to do things less efficiently). A broad patent allows you to do that - a narrow one doesn't. Then you take your research and manufacture your product in the sweet spot (within your broader patent coverage, but still with a cushion around the edges to keep out the competitors). If I were your IP counsel and it was possible in the industry, I'd probably advise you to protect that narrow range you've determined gives you a cost advantage as a trade secret (that gives you protection for as may years as you can maintain it as a secret, rather than just 20 years). (If that's not possible - then include some narrow claims for the range that works best as dependent claims to the broader claims you need to prevent design-arounds by your competitors.) Patents serve the purpose of keeping competitors out - and if your claims are narrow it's like living in mid-city where your wall butts right up against your neighbor's. You want your patent to be the McMansion on the block so you can kick the neighbor kids off your lawn before they even get close to your house.

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Response to Ms. Toad (Reply #83)

Sun Jun 9, 2019, 01:19 AM

84. The industries that I have worked in have always been ones where having a cost advantage

was important. I do things that way still. You made a lot of detailed points, I am an engineer, not an attorney, so I have not seen everything about the legal angles of exclusivity on an idea. I do know the patents that I did were narrow and worked.

But you made a lot of good points that I will keep in mind as I complete the two efforts that I mentioned.

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Response to Blue_true (Reply #84)

Sun Jun 9, 2019, 01:54 AM

87. You only know if patents "work"

when you try to keep someone out of your space. Which is a different matter than operating in a way to maximize cost advantage.

I've had to defend some doozies of infringement cases from competitors with broad patents that everyone knows didn't remotely contemplate my client's technology - but the claims were broadly enough written to include the technology - which left us with the choice of buying a license or trying to invalidate the patent (extremely expensive).. Paying the extortion fee was often cheaper than invalidating the patent

Ever hear of Lemelson? He's the genius of broad, anticipatory claims. He used his patents offensively (as a money making scheme). I'm not recommending following in his footsteps, since he's an obnoxious patent troll But the principle is the same if you want to keep people out of your space - or make money icensing it to them.

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Response to greatauntoftriplets (Reply #29)

Fri Jun 7, 2019, 07:42 PM

58. Why are you opposed to telling people about all the good they are doing?

 


They don’t mention this anywhere in their advertising and it is tucked away in the terms no one reads.

Would you be against them telling people how much good is being done with their data?

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Response to jberryhill (Reply #58)

Fri Jun 7, 2019, 09:58 PM

61. Huh?

I have no idea what they're doing with DNA information.

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Response to greatauntoftriplets (Reply #29)

Sat Jun 8, 2019, 09:06 PM

68. You are the only person so far that even remotely realize how valuable the effort

to use the data can be for society at large.

If information on your disease is in a vast population database, likely there are other people there that have your medical issue. The drug company can cross-cut data in a variety of ways to gain valuable information on potential medicines for you, typically they look for a single or several matched characteristics between you data and the data of other people that report your illness. That is valuable data that is very hard to collect and traditionally could take a decade or more to accumulate.

There are some people that see a conspiracy in every activity. It stuns me that people can live a life with that much paranoia in it.

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Response to Blue_true (Reply #68)

Sat Jun 8, 2019, 09:08 PM

69. You've explained it perfectly.

Thank you.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 11:45 AM

30. I've been dead set against that shit from the beginning.

And I tell everyone that mentions they are thinking about it not to do it. And the cops have also.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 11:49 AM

32. The horrors of data mining!

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Response to empedocles (Reply #32)

Sat Jun 8, 2019, 09:35 PM

73. Data mining can be highly beneficial to society.

There must be safeguards though.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 11:57 AM

33. All sorts of personal data is mined in all sorts of ways

Most of which nobody knows about. It's pretty much unavoidable unless you live off the grid under a rock somewhere and even then I suspect you wouldn't be completely insulated from it.

Like it or not the future of medicine is going to be heavily based on innovation using genetic research. Like it or not there will be profit associated with that innovation.

Like most people I have a smart phone, I pay for most things electronically, and I share certain information about myself on a few different public networks. Other information about me is shared by my own government. Some of the results of these things will be positive. Some will be negative. I don't spend much time worrying about it.

I have never paid for any of these services. I don't have any desire to do so, but that lack of desire has nothing to do with a fear of doomsday scenarios someone can dream up about how that data might be used nefariously.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 12:05 PM

34. On One Level

I get the concern over this, but on the other I figure they've got my DNA in the numerous blood samples they've gotten from me over the years, so what's the dif? I might as well have a little fun with it and see what they have to say about where I came from. Which I pretty much knew, but it was fun anyway. And as for inaccuracy, they were dead on. They could have done a better job IDing the Cornwall branch, but it's early in their sample collecting and those people are probably pretty tied up with the far more numerous Londoners, which they did get. You can't get upset about everything in this world, so I decided to take a pass on this one.

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Response to RobinA (Reply #34)

Fri Jun 7, 2019, 12:10 PM

36. The numerous blood samples you've given to whom?

 


Part of the play here is that people think their DNA sent to these companies is subject to the same rules as your medical and diagnostic information in the course of diagnosis and treatment of disease. It's not.

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Response to jberryhill (Reply #36)

Sat Jun 8, 2019, 12:16 AM

63. Quest

I have no belief that any rules will keep whoever wants it from getting their hands on my information. I have to waive HIPAA to be treated by any doctor who plans on billing insurance.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 12:08 PM

35. O P lumps LDS with the genetic test companies.

Fuck no. No comparison.

With LDS, you get your own planet.

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Response to 3Hotdogs (Reply #35)

Fri Jun 7, 2019, 12:51 PM

41. Oh dear...

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Response to 3Hotdogs (Reply #35)

Fri Jun 7, 2019, 12:57 PM

42. Not to mention some snazzy underwear

 

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Response to jberryhill (Reply #42)

Fri Jun 7, 2019, 06:48 PM

56. Now look what you did. I got an underwear fetish

And them hot babes with their John Wayne, wagon train, prairie dresses... and thinking on what they got under them dresses....

I’m at work and now I can’t get out of my chair for about an hour.


I hope you’re satisfied.

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Response to 3Hotdogs (Reply #35)

Sat Jun 8, 2019, 11:27 PM

82. That's a huge relief! 😊

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 12:50 PM

40. Why would anyone give away their DNA?? - and pay for it??? STUPIFYING

Law enforcement needs a subpoena....WTF!!!!!!!

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Response to asiliveandbreathe (Reply #40)

Sat Jun 8, 2019, 01:19 AM

64. My daughter did for two reasons:

1. Because she has a rare, untreatable disease, "Treatment," which is actually monitoring and symptom control, costs $200,000/year. She expressly gave her consent - with the goal of collecting a large enough pool of data to identify the genes involved in the disease so they can be targeted.

2. To find her (donor insemination) biological father. This was not an express reason - although she had been searching without success. She now knows her biological father, three half-siblings (I'm sure there are more she doesn't know about), a third mother, and her entire medical history.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 04:22 PM

51. Don't get me wrong, this isn't good, but it would be more

Concerning if it was a health insurance company buying access to the data.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 04:24 PM

52. Big Data is where it's at. Does anyone here use a grocery store discount card?

You're providing all the details of what you purchase to more large corporations who mine this data for anything from selling you more of their shit to behavioral studies and other *very* invasive identification methods.

How do companies use my loyalty card data?

Supermarkets get your data

Ever give blood? Very invasive questionnaire. Try finding a non-disclosure to go with that.

Genetic data is a huge deal and currently not protected by HIPPA. But no problem, they are all nice people, I'm sure.

I have a suspicion they aren't doing all this because they are concerned for your health and well being. You are first and foremost a revenue-generating monetary unit. If you display any signs of resistance, someone may want to look a little closer at who you are. What do your grocery carts say about you? Tack onto it your genetic data and there is quite a bit of information to figure out if you have any secrets or other possible exploitation / manipulation vectors.

Now combine all the above with your internet search history and you've got quite a lot to paint a detailed picture of you. But you know who will be the last to receive the report? You.

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Response to gtar100 (Reply #52)

Fri Jun 7, 2019, 04:57 PM

53. Oh I have a really cool online quiz for you about which Star Trek character you are

 


(I also know your IP address and can correlate your personality and taste inventory answers with all the other data I have about you, but that's just between friends)

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 05:38 PM

54. Here's some of the good that comes from genetic testing

In 1982, the 33-year-old unidentified woman was found shot to death near a Lake Tahoe hiking trail. She appeared to be dressed for a day at the lake, wearing a powder blue T-shirt, jeans, yellow sneakers and a bathing suit under her clothing.

She had no identification. No one was looking for her. So she became known as Sheep’s Flat Jane Doe, named after the trail where she was found by a group of hikers. Her remains were buried in a nameless grave; the case went cold.

Almost 37 years later, with the help of DNA detectives, genealogy records and dogged detective work, the mystery was solved. The victim in the lonely grave is Mary Silvani, a Pontiac native who grew up in Detroit, attended Mackenzie High School, had two brothers and eventually moved to California.



https://www.freep.com/story/news/local/michigan/2019/05/09/sheeps-flat-jane-doe-detroit-nevada/1141658001/?fbclid=IwAR1KLoqIk0mZXMxGnkvHVleNNTf2vQSoyc9x5fxbHLYyLCxPX-Hiesh2VAw

Until recently, this young lady was known only as "Sheep Flat Jane Doe". It took 37 years, modern DNA techniques, matches on GEDMatch, and a team of forensic genealogists to find out her name. There are literally thousands of these cases.

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Response to CanonRay (Reply #54)

Fri Jun 7, 2019, 07:39 PM

57. Did I say there was something bad about genetic testing?

 


Can you please quote to me my words which suggest there is something bad about genetic testing?

I think it is so good that they should advertise the fact that by paying them for the test, you are making a contribution to the data they sell that is used to develop new treatments.

Why do you suppose they don’t use that as a selling point?

Why don’t you tell them that it’s so damned good they should tell people about it?

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Response to jberryhill (Reply #57)

Fri Jun 7, 2019, 09:10 PM

60. I never claimed you said there was something bad.

I was just pointing out the good. No need to get testy.

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Response to jberryhill (Original post)

Fri Jun 7, 2019, 06:32 PM

55. I'm shocked! Shocked! To find there is data mining going on!

Facebook is also mining facial recognition data from some kind of "games" they promote.

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Response to jberryhill (Original post)

Sat Jun 8, 2019, 01:47 AM

65. Reminds me

I must dig out the GATTACA dvd and rewatch.

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Response to jberryhill (Original post)

Sat Jun 8, 2019, 06:18 PM

66. How to Delete Your Data From 23andMe, Ancestry, and Other Sites

From Consumer Reports:

How to Delete Your Data From 23andMe, Ancestry, and Other Sites
Worried about your privacy after taking an at-home DNA test? Here's what you should know and what you can do.
By Kevin Loria
January 29, 2019

If you’ve sent a DNA sample such as a tube of spit to 23andMe, Ancestry, MyHeritage, or one of the many other companies that offer direct-to-consumer genetic testing, you’ve sent them the essential information they need to provide you with their analysis of your genetic code.

But if you later decide that you want to remove your genetic information from the web for privacy reasons, can you? And should you?

Genetic data can reveal information about your health, your risk for certain diseases, and your familial relationships—potentially including those previously unknown or undisclosed.

But deleting your genetic data is not always straightforward, according to James Hazel, Ph.D., J.D., a postdoctoral fellow at the Center for Genetic Privacy and Identity in Community Settings at Vanderbilt University Medical Center.

The degree to which you have control over the genetic information you’ve submitted, and even your physical DNA sample, “varies widely, depending on the company,” says Hazel, who has published research on the privacy policies of genetic testing companies.

- more at link: https://www.consumerreports.org/health-privacy/how-to-delete-genetic-data-from-23andme-ancrestry-other-sites/

From further along in the article:
"...the HIPAA privacy laws that protect patients in a medical setting don’t apply to companies that do direct-to-consumer genetic testing."

I've never signed up for any of these, but if I had, I'd want to know how to control the use of my data. Of course, these companies have probably already sold or shared their test subjects' -- er, customers' -- data by the time any of them get around to trying to get it scrubbed, but maybe some people will find the information useful.

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Response to jberryhill (Original post)

Sat Jun 8, 2019, 08:48 PM

67. Meh.

Just a inexpensive and time savings way to get valuable population statistics data. It just lets drug companies know where to put their research money. Population statistics data is the most sanitized data there is, it's value would be lost if names are attached to it.

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Response to jberryhill (Original post)

Sat Jun 8, 2019, 09:37 PM

74. I won't have my DNA tested

and that is exactly the reason why.

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Response to jberryhill (Original post)

Sat Jun 8, 2019, 10:43 PM

77. They are supposed to get your consent if data is used by secondary parties, and inform you whether

the data is deidentified or not

Even if they went through such a process, depending how that consent was presented there could be some legal issues involved

I see so many drug company commercials now pushing their drugs, followed by law firm commercials suing those drug companies in the issues with those drugs, I wonder sometimes if these drug companies and law firms might not have an agreement where one provides business to another in return for monetary compensation



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Response to jberryhill (Original post)

Sun Jun 9, 2019, 01:30 AM

85. Easy way around all this?

We got our kits from Amazon and then used our the first initial of our names and a generic email not tied to any other of our emails or our phone numbers. We also were (I hope) careful in also not consenting to any waiver of data privacy. As far as I can remember, there is no other sensitive information we provided that could in any way identify us.

We used 23 and Me. Unless Amazon shares our identity with 23 and Me in terms of the test kit number, have we really lost any privacy?

That's not meant to be rhetorical. I am asking the group's thoughts on this.

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Response to jberryhill (Original post)

Sun Jun 9, 2019, 01:38 AM

86. I am of many minds on this subject.

I will admit finding an easily treatable, but, often undiagnosed significant lifespan shortening genetic medical condition by undergoing DNA analysis. So, I may be biased. There currently is some small benefit to the sampled from the process. In another potential scenario of DNA data collection, a less ethical company would set up sampling in public restrooms with a small print EULA (which nobody would read) posted on the door giving them complete ownership of anything anyone left there to do with whatever the company supplying the restroom wished. Including any DNA information contained within it. In this scenario, there is no benefit to the sampled.

I share your alarm and concern at the direction the legal control of these archives is moving and the secrecy surrounding it.

Another thing I've learned has me questioning the balance of nature vs nurture I had always assumed. It may be slanted more toward nature than I had always believed and affect things I used to believe to be driven solely by upbringing and acculturation.





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