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Melissa in Australia

DNA data sharing

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I have never really understood why people do their DNA testing for ancestry etc. to me the risk of information eventually being used for other things was too much of a concern. 

 According to the SBS news article 23andMe has sold the DNA they have collected to a British Pharmaceutical company https://www.sbs.com.au/news/dna-testing-is-knowing-your-ancestry-worth-the-data-sharing-risk

 

I thought this was interesting quote 'A little-understood aspect of the DNA testing industry is that many companies are not making their money from selling test kits, but by selling customer data.'

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Agreed.

I can't imagine ever doing that. And not only because of losing control of my very private data, but also because I have serious doubts that the data is anywhere near correct.

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Yeah, no thanks. I don't want my genetic information getting passed out to anyone willing to pay for it.

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I have never understood it either. One of my concerns was that it could be used to establish a previously existing condition and then used to deny health and life insurance. Right now the protection of previously existing conditions for medical insurance is tangled up in the court, and it very well may go away soon, so my fear was not unfounded. There are also substantial employer privacy concerns. You can PM me for more information on that if you want to - it's political so I don't want to go into it here.

 

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I agree and have wondered why I haven’t heard more people concerned about this. I have been curious about two of my kids and the MTHFR gene, but I’m not willing to have their DNA information catalogued and sold, so I’m not willing to do 23andme to find out. I’m also uncertain about the accuracy, having read some articles about people getting very different results from different services. 

It has struck me that if close family members use one of these services, it could allow certain data to be extrapolated about people who never actually had it done themselves. 

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This is one of my dh's big soap boxes. It's amazing how the desire for self-knowledge has overridden common sense acknowledgement of how data is used in this country (world).

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Well here is the thing.  The info is out there.....maybe not yours but enough that it is going to forever alter the way medical and life insurance coverage is issued.  Medical coverage is already so messed up....large segments of people can not afford to keep health insurance. So how all of that turns out remains to be seen....and none of us are going to alter it by whether or not we do a DNA test. 

I am not sure what is supposedly inaccurate about it?  It is very accurate on identifying relatives.  One's 'geographical roots' is not so accurate yet....it gets more accurate the more people get into the pool. 

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4 hours ago, sassenach said:

This is one of my dh's big soap boxes. It's amazing how the desire for self-knowledge has overridden common sense acknowledgement of how data is used in this country (world).

 

Some people have hard-to-diagnose medical issues and are hoping a DNA test will turn up some kind of genetic anomaly that will allow them to treat it. It isn't a lack of common sense to put your health right now before some future concern about genetic privacy that may never amount to anything.

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I did it years ago.  I'm all for participating in medical research and stuff.  Did 23andme because I was adopted and didn't know my history.

 

I did the American Gut thing years ago too (gut micro biome research).  

 

Also signed up for All of US through the NIH.  https://allofus.nih.gov

Edited by umsami
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CA stores all babies DNA since 1983, so that ship has sailed. At least 23andMe is voluntary.

Quote

Some states destroy the blood spots after a year, 12 states store them for at least 21 years.

California, however, is one of a handful of states that stores the remaining blood spots for research indefinitely in a state-run biobank.

Even though the parents pay for the lifesaving test itself, the child's leftover blood spots become property of the state and may be sold to outside researchers without the parent's knowledge or consent.

"I just didn't realize there was a repository of every baby born in the state. It's like fingerprints," new mom Soniya Sapre responded.

Some states allow parents to opt-in or give informed consent before they store the child's sample.

In California, however, in order to get the potentially lifesaving genetic test for your child, you have no choice but to allow the state to collect and store the remaining samples.

You do have the right to ask the biobank to destroy the leftovers after the fact, though the agency's website states it "may not be able to comply with your request."

You also have the right to find out if your child's blood spots have been used for research, but you would have to know they were being used in the first place and we've discovered that most parents don't.

https://www.cbsnews.com/news/california-biobank-dna-babies-who-has-access/

 

I had serious reservations, but finding my mom's bio mom and family was totally worth it. 

Edited by Plum Crazy

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8 hours ago, kand said:

I agree and have wondered why I haven’t heard more people concerned about this. I have been curious about two of my kids and the MTHFR gene, but I’m not willing to have their DNA information catalogued and sold, so I’m not willing to do 23andme to find out. I’m also uncertain about the accuracy, having read some articles about people getting very different results from different services. 

It has struck me that if close family members use one of these services, it could allow certain data to be extrapolated about people who never actually had it done themselves. 

Yep.  I've heard a couple of stories lately of crimes being solved through tracking down relatives to get a DNA likeness.  While I'm glad the criminals are found, that sure would be one awkward knock on the door. 

 I am admittedly curious as to what my results would be regarding my genealogy. But I have no desire to know anything about health issues or look down the road into my medical future. Plus everything techwife said. 

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3 hours ago, Scarlett said:

Well here is the thing.  The info is out there.....maybe not yours but enough that it is going to forever alter the way medical and life insurance coverage is issued.  Medical coverage is already so messed up....large segments of people can not afford to keep health insurance. So how all of that turns out remains to be seen....and none of us are going to alter it by whether or not we do a DNA test. 

I don't agree with this. Our personal DNA could 1) affect our life and health insurance premiums  2) at some point allow the very fact that a DNA test has been conducted to be considered notification of a preexisting condition  2) allow employers to discriminate based upon DNA results.

All of this is in play in either the legislature or the court system as we speak.

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2 hours ago, Mergath said:

 

Some people have hard-to-diagnose medical issues and are hoping a DNA test will turn up some kind of genetic anomaly that will allow them to treat it. It isn't a lack of common sense to put your health right now before some future concern about genetic privacy that may never amount to anything.

Totally, though I would argue that that’s the vast minority. 

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I don't think wanting to use DNA for medical reasons or real research is the same as using these kinds of companies.  Apart from the practical concerns, I have very serious issues with a lot of the way we treat information and it's commodification, including genetic information.  I have serious issues with companies owning patents of plant DNA too, even if they somehow "created" it.  I don't think that just because people might choose to sell things, that is something that would should recognize as a commodity.  I don't think people should be allowed to commoditize organs, or bodies, either.

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2 hours ago, TechWife said:

I don't agree with this. Our personal DNA could 1) affect our life and health insurance premiums  2) at some point allow the very fact that a DNA test has been conducted to be considered notification of a preexisting condition  2) allow employers to discriminate based upon DNA results.

All of this is in play in either the legislature or the court system as we speak.

About 8 years ago we were denied a change in health insurance due to a dna test. My daughter had a screening at birth which parents by law can not opt out of in my state.  After she triggered the screening, she had the required genetic testing and we learned she is a carrier for a pretty costly condition with a short life expectancy (35 when she was born).

Our health insurance costs were eating us alive so we decided to increase our deductible to decrease our premiums. We were self insured so we had to go through complete medical underwriting to make that change. After submitting stacks and stacks of medical records we were denied coverage due to our daughter being a CARRIER for this condition. We were able to keep the existing coverage but we could not change plans even within the same insurance company!  

My understanding is the laws have since changed to prevent this type of thing from happening, but who knows how many more times the laws will change over my daughter’s lifetime.

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11 minutes ago, Rachel said:

My understanding is the laws have since changed to prevent this type of thing from happening, but who knows how many more times the laws will change over my daughter’s lifetime.

The laws are being challenged and re-written as we speak. PM me if you want specific information.

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5 hours ago, Mergath said:

 

Some people have hard-to-diagnose medical issues and are hoping a DNA test will turn up some kind of genetic anomaly that will allow them to treat it. It isn't a lack of common sense to put your health right now before some future concern about genetic privacy that may never amount to anything.

 

This is why we did it. It worked for me.

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My dd did it several years ago after we felt we had hit an absolute dead end with her complex health problems.  

As far as the accuracy... She had already been to Mayo and they ran multiple tests.  Also, I had had genetic testing for breast cancer (because every woman in my family has had breast cancer so far, with the exception of my sister, my dd's and I).  23andme tested for some of the exact same issues, and the results were exactly the same as her Mayo test results and my own test results for breast cancer genes.

Of course she's also discovered a lot of other super interesting stuff, some of it really, really helpful.

I sure hope there are no insurance issues, etc., for her down the road, but I guess we'll cross that bridge when we come to it.  Sometimes current desperation comes before potential future concerns.

Edited by J-rap
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1 hour ago, J-rap said:

My dd did it several years ago after we felt we had hit an absolute dead end with her complex health problems.  

As far as the accuracy... She had already been to Mayo and they ran multiple tests.  Also, I had had genetic testing for breast cancer (because every woman in my family has had breast cancer so far, with the exception of my sister, my dd's and I).  23andme tested for some of the exact same issues, and the results were exactly the same as her Mayo test results and my own test results for breast cancer genes.

Of course she's also discovered a lot of other super interesting stuff, some of it really, really helpful.

I sure hope there are no insurance issues, etc., for her down the road, but I guess we'll cross that bridge when we come to it.  Sometimes current desperation comes before potential future concerns.

 

So, I'm curious if you don't mind sharing - did you expect that you might get different or better results from the private company than you did from the Mayo clinic?  

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As a health practitioner, everything about health is taboo even way back. The reason why is because we are not open to something that we do not understand. For example, the Blood transfusion, before everyone is against that procedure because everyone believes that God forbids that action and God only have the last say for the lives of the humans. Fast track to now, blood transfusion procedure has saved countless lives. So why don't we be open to the new procedure of the DNA sharing where in the future it might create a better world for us? 

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1 hour ago, Annewelz said:

As a health practitioner, everything about health is taboo even way back. The reason why is because we are not open to something that we do not understand. For example, the Blood transfusion, before everyone is against that procedure because everyone believes that God forbids that action and God only have the last say for the lives of the humans. Fast track to now, blood transfusion procedure has saved countless lives. So why don't we be open to the new procedure of the DNA sharing where in the future it might create a better world for us? 

Because there are ethical and privacy concerns with how the information is stored, shared and used. Not everything that is possible is necessary or good. Several people have outlined their concerns in this thread.

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12 hours ago, TechWife said:

Because there are ethical and privacy concerns with how the information is stored, shared and used. Not everything that is possible is necessary or good. Several people have outlined their concerns in this thread.

I know, I'm just opening the other option of DNA data sharing

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On 8/7/2018 at 9:58 AM, Annewelz said:

As a health practitioner, everything about health is taboo even way back. The reason why is because we are not open to something that we do not understand. For example, the Blood transfusion, before everyone is against that procedure because everyone believes that God forbids that action and God only have the last say for the lives of the humans. Fast track to now, blood transfusion procedure has saved countless lives. So why don't we be open to the new procedure of the DNA sharing where in the future it might create a better world for us? 

 

Essentially what you are saying here is any tech, or structure associated with it, is ok.  The idea that there could be benefits to study of genetics does not imply that private companies holding personal genetic information is a great idea.

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On 8/7/2018 at 6:47 AM, Bluegoat said:

 

So, I'm curious if you don't mind sharing - did you expect that you might get different or better results from the private company than you did from the Mayo clinic?  

 

No, not at all.  My dd first went to Mayo for some tests, but they were only testing for certain conditions.  So then she/we decided to try 23andme in case there were other conditions or even clues to health conditions that might come up in her results.  We actually had no idea 23andme would be testing for some of the same conditions.  We would not have purposely tested for the same conditions again because we do trust Mayo completely.  But, in the end, it was helpful for us to see because since the results lined up with Mayo's results, we felt they must be pretty accurate.

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It saved my friend by doing 23 and me.  She did it to figure out some family stuff and discovered that she has a gene that makes her not able to have certain medicines for anesthesia.  Thanks to that info from 23 and me, she took the results to her doctor who redid the testing to make it official and it was right.  

 

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I think the people who are dismissive of insurance concerns have never faced the cold reality of buying their own health insurance lately or having been denied coverage.  They've never seen the real bills that go along with that. That's not making things better for everyone.  It's making it tragically worse for some.  

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24 minutes ago, Homeschool Mom in AZ said:

I think the people who are dismissive of insurance concerns have never faced the cold reality of buying their own health insurance lately or having been denied coverage.  They've never seen the real bills that go along with that. That's not making things better for everyone.  It's making it tragically worse for some.  

Oh I have purchased my own insurance and my dh can't get life insurance (if he loses his group life insurance through his job we have none). If he loses his job we won't have insurance.  Insurance costs are out of control.  But I don't think anything we do in regards to dna testing or not will have much effect on that. 

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22 minutes ago, Homeschool Mom in AZ said:

I think the people who are dismissive of insurance concerns have never faced the cold reality of buying their own health insurance lately or having been denied coverage.  They've never seen the real bills that go along with that. That's not making things better for everyone.  It's making it tragically worse for some.  

I agree. Denial of healthcare coverage and/or the affordability of insurance is a huge issue. Those of us that need it can't afford to be dismissive!

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Just now, Scarlett said:

Oh I have purchased my own insurance and my dh can't get life insurance (if he loses his group life insurance through his job we have none). If he loses his job we won't have insurance.  Insurance costs are out of control.  But I don't think anything we do in regards to dna testing or not will have much effect on that. 

If the results of your DNA testing cause you to one day be denied insurance or increase your premium because of a pre-exisiting condition, you will probably change your mind. Also, when your husband's employer looks at the DNA results and decides he's going to be too expensive and conveniently lays him off or just outright fires him, you will change your mind. Lest you think neither of these can happen - know that the first scenario is currently winding it's way through the courts as insurance companies try to rid themselves of the requirement to cover pre-existing conditions and the US Justice Dept.  has decided not to defend the requirement, and the second one is on the US congressional calendar in bill form.

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6 hours ago, J-rap said:

 

No, not at all.  My dd first went to Mayo for some tests, but they were only testing for certain conditions.  So then she/we decided to try 23andme in case there were other conditions or even clues to health conditions that might come up in her results.  We actually had no idea 23andme would be testing for some of the same conditions.  We would not have purposely tested for the same conditions again because we do trust Mayo completely.  But, in the end, it was helpful for us to see because since the results lined up with Mayo's results, we felt they must be pretty accurate.

Is there a reason you didn't have Mayo do a more comprehensive test? I'm just curious because I have always why people who have a real, true need to know reason for the testing don't get genetic counseling and go through traditional routes, like Mayo. Don't feel like you have to answer - just picture me over here scratching my head?.

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14 minutes ago, TechWife said:

If the results of your DNA testing cause you to one day be denied insurance or increase your premium because of a pre-exisiting condition, you will probably change your mind. Also, when your husband's employer looks at the DNA results and decides he's going to be too expensive and conveniently lays him off or just outright fires him, you will change your mind. Lest you think neither of these can happen - know that the first scenario is currently winding it's way through the courts as insurance companies try to rid themselves of the requirement to cover pre-existing conditions and the US Justice Dept.  has decided not to defend the requirement, and the second one is on the US congressional calendar in bill form.

If the courts reverse the law on this issue I, along with my husband and many many people will be out of luck.  We will not have insurance.  Health insurance is a disaster and it is not caused by dna testing.  And no I will not change my mind.  

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1 hour ago, Homeschool Mom in AZ said:

I think the people who are dismissive of insurance concerns have never faced the cold reality of buying their own health insurance lately or having been denied coverage.  They've never seen the real bills that go along with that. That's not making things better for everyone.  It's making it tragically worse for some.  

I've been buying my own health insurance for years.  And even when I wasn't, we always received our statement of benefits for each bill.  Are there people who don't? Where does that go then?

I have so many pre-existing conditions (as do my spouse and kids) IN OUR MEDICAL RECORDS that it is not DNA that would screw us.  It would be the government rescinding laws in order to allow denials based on pre-existing conditions. I think it's a pretty fair guess to say there'd be exponentially more denials based on actual medical records of existing conditions that the potential future ones indicated by DNA tests.

Put the blame on the actual cause.

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47 minutes ago, TechWife said:

Is there a reason you didn't have Mayo do a more comprehensive test? I'm just curious because I have always why people who have a real, true need to know reason for the testing don't get genetic counseling and go through traditional routes, like Mayo. Don't feel like you have to answer - just picture me over here scratching my head?.

Absolutely you can ask!  Mayo is very conservative in their testing.  They don't do random testing unless there is a clear reason.  They only do testing that they feel is justified by symptoms they can clearly see, which is often quite limited.

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1 hour ago, J-rap said:

Absolutely you can ask!  Mayo is very conservative in their testing.  They don't do random testing unless there is a clear reason.  They only do testing that they feel is justified by symptoms they can clearly see, which is often quite limited.

Thank you - that makes sense, especially given that insurance companies don't cover what isn't "medically necessary." They probably have to tie each part of the test to a specific symptom to justify the expense.

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1 hour ago, Carrie12345 said:

I've been buying my own health insurance for years.  And even when I wasn't, we always received our statement of benefits for each bill.  Are there people who don't? Where does that go then?

I have so many pre-existing conditions (as do my spouse and kids) IN OUR MEDICAL RECORDS that it is not DNA that would screw us.  It would be the government rescinding laws in order to allow denials based on pre-existing conditions. I think it's a pretty fair guess to say there'd be exponentially more denials based on actual medical records of existing conditions that the potential future ones indicated by DNA tests.

Put the blame on the actual cause.

Yes, there are people who don't buy their own insurance. People, like my family, who are covered under an employer group plan don't see the true cost of the insurance premium because the employer picks up part of the tab.

Of course it would be the laws that would cause the loss of coverage of pre-existing conditions. No one is saying otherwise.

We have many pre-existing conditions in our records as well. However, they would only find what is there. Why would I want to add to the list by getting a DNA test? 

The proportion of pre-existing conditions in medical records to the proportion of those revealed in genetic tests isn't really relevant. The fact that this information may not be protected in the future is what is relevant and is what most people are concerned about.

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2 hours ago, Scarlett said:

If the courts reverse the law on this issue I, along with my husband and many many people will be out of luck.  We will not have insurance.  Health insurance is a disaster and it is not caused by dna testing.  And no I will not change my mind.  

Right - which will prove what you said earlier about DNA testing not having an effect on insurance costs. If DNA causes increased premiums, which then causes insurance to be unaffordable to you, it most certainly will have had an impact.

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5 minutes ago, TechWife said:

Right - which will prove what you said earlier about DNA testing not having an effect on insurance costs. If DNA causes increased premiums, which then causes insurance to be unaffordable to you, it most certainly will have had an impact.

I disagree that the dna tests we are having done is what will raise the rates or cause us to not be insurable.  We are already uninsurable if the law changes to allow pre existing.  

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2 hours ago, Carrie12345 said:

I've been buying my own health insurance for years.  And even when I wasn't, we always received our statement of benefits for each bill.  Are there people who don't? Where does that go then?

I have so many pre-existing conditions (as do my spouse and kids) IN OUR MEDICAL RECORDS that it is not DNA that would screw us.  It would be the government rescinding laws in order to allow denials based on pre-existing conditions. I think it's a pretty fair guess to say there'd be exponentially more denials based on actual medical records of existing conditions that the potential future ones indicated by DNA tests.

Put the blame on the actual cause.

Exactly.  I know my husband's insurance premium is paid by his employer and mine is 50% paid.  So yes I know the cost.  It is a benefit of his employment.  I see all of the EOBs. 

And I agree if the law goes away MANY people who don't have group policies will lose their coverage or be priced out of it.  

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Genetic discrimination is currently illegal.  It could be changed, but even if the pre-existing rules do get overturned, genetic discrimination will not be.  You can have all the known genes for a condition and NEVER get it.  Environment does matter, even if it's secondary to genetics.  Having a genetic predisposition to a disease is not the same thing as having the disease, except for a few rare conditions.

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10 minutes ago, Katy said:

Genetic discrimination is currently illegal.  It could be changed, but even if the pre-existing rules do get overturned, genetic discrimination will not be.  You can have all the known genes for a condition and NEVER get it.  Environment does matter, even if it's secondary to genetics.  Having a genetic predisposition to a disease is not the same thing as having the disease, except for a few rare conditions.

I believe this applies to health insurance but not to life insurance.

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On 8/6/2018 at 10:44 PM, Rachel said:

About 8 years ago we were denied a change in health insurance due to a dna test. My daughter had a screening at birth which parents by law can not opt out of in my state.  After she triggered the screening, she had the required genetic testing and we learned she is a carrier for a pretty costly condition with a short life expectancy (35 when she was born).

Our health insurance costs were eating us alive so we decided to increase our deductible to decrease our premiums. We were self insured so we had to go through complete medical underwriting to make that change. After submitting stacks and stacks of medical records we were denied coverage due to our daughter being a CARRIER for this condition. We were able to keep the existing coverage but we could not change plans even within the same insurance company!  

My understanding is the laws have since changed to prevent this type of thing from happening, but who knows how many more times the laws will change over my daughter’s lifetime.

But doesn’t satisfying my curiosity about my genealogy make it all worth it? ?

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43 minutes ago, Katy said:

Genetic discrimination is currently illegal.  It could be changed, but even if the pre-existing rules do get overturned, genetic discrimination will not be.  You can have all the known genes for a condition and NEVER get it.  Environment does matter, even if it's secondary to genetics.  Having a genetic predisposition to a disease is not the same thing as having the disease, except for a few rare conditions.

At the risk of getting too political, I suggest you look into HR1313, concerning workplace wellness programs. I'll leave you to draw your own conclusions, lest I really cross the line into politics.  Healthcare should not be a political issue.

An explanation from Duke University:

Programs meeting these requirements will be considered exempt from further wellness program-related restrictions promulgated by the American Disabilities Act of 1990 (ADA) (42 U.S.C. 12112(d)(4)(B)), the Public Health Service Act (PHSA) (42 U.S.C. 300gg–4(d)), and the Genetic Information Nondiscrimination Act of 2008 (GINA) (42 U.S.C. 2000ff–1(b)(2)). Several notable clarifications and changes in the governance of wellness programs include:

  • Employers asking for medical histories and health appraisals, even in relation to disabilities, would be considered in compliance with ‘acceptable examinations and inquiries’ as outlined in the ADA. This solidifies an Equal Employment Opportunity Commission (EEOC) ruling that the incentive provided by the ‘reward’, whether financial or in-kind, is not sufficient to render an employee’s decision to participate as involuntary. Essentially, it would clarify that employee participation is, in fact, voluntary, so as to limit litigation around the subject.
  • Any activity of wellness programs, including genetic testing and inquiring about family history, would be considered in compliance with the PHSA and ADA exemptions for ‘underwriting purposes’, those used to determine eligibility for or the cost of a health plan.
  • Employers would be able to collect personal genetic information, whereas currently they can only access genetic information in a de-identified, aggregate form. This is already problematic at small companies where it is simple to identify employees with limited genetic information.
  • Employers would be able to collect information about the manifested disease or disorder of a family member (a dependent or a relative up to the fourth degree) without violating GINA.

Further, the bill empowers administrative agency influence by shifting the authority of regulatory interpretation from the independent EEOC to the HHS, DOL, and the Treasury.

Additional information - not as objective as that from Duke, but lays out the impact this could have on insurance.

 

Edited by TechWife
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4 hours ago, Homeschool Mom in AZ said:

I think the people who are dismissive of insurance concerns have never faced the cold reality of buying their own health insurance lately or having been denied coverage.  They've never seen the real bills that go along with that. That's not making things better for everyone.  It's making it tragically worse for some.  

I totally agree with you. :)

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2 hours ago, TechWife said:

Thank you - that makes sense, especially given that insurance companies don't cover what isn't "medically necessary." They probably have to tie each part of the test to a specific symptom to justify the expense.

Yes, exactly.

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Well I did 23 and me and had no genetic issues I did not know about already-- Factor V Leiden I knew about and my history is worse than the genetic report.   The other one they say is not a factor.  So who cares?  

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I am not concerned. There are genetic illnesses in my family. Pharmaceuticals do research to treat those things. They can't really use the data to clone me, nor would they want to. However, maybe some day, there will be better treatments or even cures for things. Think about your grandchildren or great grandchildren not having the some of the struggles that people face today because of advances in genetics. This is how it happens.

Edited by Janeway

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19 minutes ago, Janeway said:

 Think about your grandchildren or great grandchildren not having the some of the struggles that people face today because of advances in genetics. This is how it happens.

I guess I'm not willing to concede, at this point in time, that the research will be conducted in a manner that protects my privacy and in a way that results in ethical treatments. Companies can't even protect something as simple as credit card information - how are they going to protect my genetic information?

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It's not just about genetic illnesses and personal choice though.  If individuals are making these choices to have commercial entities hold their DNA, that means that the commercial entities have a way of finding information about people who did not choose to submit their DNA.  

The whole question of who owns data, or whether it can be owned at all, and how it can be used, is a huge minefield because it is not an individual choice.

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