Genetic Privacy

[Raising Heel]

You might have read recently about how detectives tracked down the Golden State Killer using decades-old DNA evidence. In the news today, the National Institutes of Health is launching a project aimed at collecting DNA from 1 million people to use for disease prevention and treatment. Several major healthcare providers plan to make DNA sequencing a routine part of patient care. Some companies even want their employees to submit to genetic testing or pay a fine.

Has anyone here submitted DNA to a company like 23andMe? Is anyone here concerned about the privacy and security of their DNA? The possibilities are fascinating but this definitely has shades of Big Brother:

"Given just a sequence of DNA bases — the adenines, thymines, guanines, and cytosines along the double helix — and no other information, it is now possible to work back to the specific person from whom it originated, out of the entire US population."

 

[Hark_The_Sound_2010]

Some of the stuff they can do with genetic testing is pretty impressive.

That said, anyone should be able to opt out of it with their healthcare provider if they don't want to participate.

 

[nctransplant]

Some of the stuff they can do with genetic testing is pretty impressive.

That said, anyone should be able to opt out of it with their healthcare provider if they don't want to participate.

This^^^^^^
Also employers should not require testing.

 

[Raising Heel]

That said, anyone should be able to opt out of it with their healthcare provider if they don't want to participate.

Also employers should not require testing.

Agreed on both counts. I think you should be able to opt out of any and all genetic testing, but what's concerning is that some of that information can be obtained without your consent or knowledge.

 

[JuleZ '02 HEEL]

If you're not doing anything wrong you have nothing to fear.




Am I doing it right?

 

[BillyL]

If you're not doing anything wrong you have nothing to fear.

Am I doing it right?

This.

 

[Heels Noir]

This.

I'm a lot more concerned with the wrong person having my Social Security number and other personal financial information than a sample of my DNA.

 

[heelz2345]

I just kept having this song in my head reading this thread. Carry on.

 

[TarHeelMark]

Agreed on both counts. I think you should be able to opt out of any and all genetic testing, but what's concerning is that some of that information can be obtained without your consent or knowledge.

Agreed.

 

[TarHeelMark]

I would be concerned that health insurance providers will want dna samples, and could potentially raise your rates if they detect that you are genetically predisposed to certain diseases that are expensive to treat.

 

[Raising Heel]

I would be concerned that health insurance providers will want dna samples, and could potentially raise your rates if they detect that you are genetically predisposed to certain diseases that are expensive to treat.

Absolutely, and this raises an interesting question.

If you're a bad driver -- as evidenced by citations, claims, accidents, etc. -- your car insurance company is going to charge you a higher premium than other customers who are safer drivers.

Should your health insurance company be allowed to do the same thing if you're a high risk/high cost patient? If so, do you consider that ethical? It makes obvious business sense, but is it morally acceptable? I think those answers are easy in the case of car insurance. Things get weird when we start talking about human beings, though.

There's also the question of causation, meaning some diseases are genetic in nature and you have little control over whether you'll be affected by them. Other diseases are the result of poor choices, like someone who develops chronic obstructive pulmonary disease (COPD) because they smoke. These are the gray areas where the questions become even more complicated, IMO.

 

[grillheel]

Absolutely, and this raises an interesting question.

If you're a bad driver -- as evidenced by citations, claims, accidents, etc. -- your car insurance company is going to charge you a higher premium than other customers who are safer drivers.

Should your health insurance company be allowed to do the same thing if you're a high risk/high cost patient? If so, do you consider that ethical? It makes obvious business sense, but is it morally acceptable? I think those answers are easy in the case of car insurance. Things get weird when we start talking about human beings, though.

There's also the question of causation, meaning some diseases are genetic in nature and you have little control over whether you'll be affected by them. Other diseases are the result of poor choices, like someone who develops chronic obstructive pulmonary disease (COPD) because they smoke. These are the gray areas where the questions become even more complicated, IMO.

Surely you don’t think a health insurance company would do something unethical?

 

[Raising Heel]

Surely you don’t think a health insurance company would do something unethical?

They're just trying to return value to the shareholder, Hank.

 

[grillheel]

They're just trying to return value to the shareholder, Hank.

Riiiiight!

 

[TarHeelMark]

Shirley you don’t think a health insurance company would do something unethical?

FIFY

 

[gunslingerdick]

I'm a lot more concerned with the wrong person having my Social Security number and other personal financial information than a sample of my DNA.

My wife is paranoid about identity theft. We don't even have checks because she doesn't like having bank info floating around. When we get junk mail, she can't just throw it away like a normal person. She has to shred or burn it. That's why we have junk mail piled up from 2014. It's ridiculous.

I don't sweat it. Identity theft? Shit,...I'd love for someone to steal my identity. They can be saddled with my bills and debt.

 

[Littlejon]

My wife is paranoid about identity theft. We don't even have checks because she doesn't like having bank info floating around. When we get junk mail, she can't just throw it away like a normal person. She has to shred or burn it. That's why we have junk mail piled up from 2014. It's ridiculous.

I don't sweat it. Identity theft? Shit,...I'd love for someone to steal my identity. They can be saddled with my bills and debt.

Heck, if someone stole my identity I’d expect them to return it in a few days with a sympathy card and a $20 bill attached!

 

[BillyL]

Sheeet . . I wish I had an identity worth stealing.

 

[Heels Noir]

My wife is paranoid about identity theft. We don't even have checks because she doesn't like having bank info floating around. When we get junk mail, she can't just throw it away like a normal person. She has to shred or burn it. That's why we have junk mail piled up from 2014. It's ridiculous.

I don't sweat it. Identity theft? Shit,...I'd love for someone to steal my identity. They can be saddled with my bills and debt.

I certainly don't obsess over identity theft. I check my credit report on a regular basis and that's about it. But though I've never submitted a sample of my DNA, I don't think I would be opposed to it. I have a good family health history and I'm not planning on becoming a career criminal any time soon.

 

[Raising Heel]

For those of you opposed to DNA testing, would you change your mind knowing that testing could potentially allow doctors to identify and treat a disease before it manifests itself?

"We believe, but we have not yet proven, that this is cost-effective meaning the cost of the test is going to be offset by catching people earlier in their disease course or eliminating a disease," [Geisinger President and CEO David] Feinberg said.

So far, in a research collaboration with Regeneron Pharmaceuticals that involved amassing data from 200,000 people, Feinberg said the organization found it could identify medically actionable findings in the genome before patients became sick in about 3.5% of patients. Officials said they eventually expect as many as 10% to 15% of patients might benefit from testing.

https://www.fiercehealthcare.com/hospitals-health-systems/geisinger

 

[gunslingerdick]

For those of you opposed to DNA testing, would you change your mind knowing that testing could potentially allow doctors to identify and treat a disease before it manifests itself?

"We believe, but we have not yet proven, that this is cost-effective meaning the cost of the test is going to be offset by catching people earlier in their disease course or eliminating a disease," [Geisinger President and CEO David] Feinberg said.

So far, in a research collaboration with Regeneron Pharmaceuticals that involved amassing data from 200,000 people, Feinberg said the organization found it could identify medically actionable findings in the genome before patients became sick in about 3.5% of patients. Officials said they eventually expect as many as 10% to 15% of patients might benefit from testing.

https://www.fiercehealthcare.com/hospitals-health-systems/geisinger

When you get into this kind of stuff I can't help but think mankind is f*cking with nature/God's plan/etc. If we had the power to cure every ailment that man suffers from, should we? Let's take spirituality out of it and just look at it logistically. If the death rate dropped substantially worldwide, where would all these people live? How would they survive? If we increased the life expectancy of humans to the age of 90, I don't think people comprehend the enormous impact that would have on our resources.

When asked "if you could have any super power, what would it be?", I always used to say "the ability to cure any illness or sickness with the touch of my hand." But the more I think about that, the less noble and more problematic it becomes. So I'll stick with x-ray vision.

 

[Hark_The_Sound_2010]

For those of you opposed to DNA testing, would you change your mind knowing that testing could potentially allow doctors to identify and treat a disease before it manifests itself?

"We believe, but we have not yet proven, that this is cost-effective meaning the cost of the test is going to be offset by catching people earlier in their disease course or eliminating a disease," [Geisinger President and CEO David] Feinberg said.

So far, in a research collaboration with Regeneron Pharmaceuticals that involved amassing data from 200,000 people, Feinberg said the organization found it could identify medically actionable findings in the genome before patients became sick in about 3.5% of patients. Officials said they eventually expect as many as 10% to 15% of patients might benefit from testing.

https://www.fiercehealthcare.com/hospitals-health-systems/geisinger

I'm certainly not opposed to DNA testing, but I'll answer anyways. I would definitely do this, provided I could be assured that all documentation tying that DNA to me is destroyed after the testing is completed and the results communicated back to me.

I think the potential benefit here is huge.

 

[Raising Heel]

Gene-editing equipment and techniques have become more affordable and easier to use in recent years, giving birth to a new wave of "biohackers" who experiment with gene editing at home—a trend that some experts worry could be extremely dangerous, as these "citizen-scientists" operate with little regulatory oversight.

https://www.advisory.com/daily-briefing/2018/05/30/diy-gene-editing

 

[Raising Heel]

Whoops.

'You have a 100% risk of early-onset Alzheimer's,' 23andMe data told him. It was wrong.

 

[WhatTheHeel?]

...and I'm not planning on becoming a career criminal any time soon.

But don't you want to keep that option open???

Seriously, wasn't one of these cases solves by tracing the DNA of the guilty party? He had never had his DNA recorded?

 

[Raising Heel]

"Relatives you've never met can take DNA tests that [identify] you. And the actions you take can affect relatives you don't even know."