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Allowing Researchers Access to Genetic Information

04/12/2016 11:36 AM

Yesterday I heard this story, about geneticists who are searching for "genetic superheroes." These superheroees have genetic mutations that apparently block the effects of devastating diseases. Their methodology for identifying such individuals is interesting and painstaking -- searching through genetic information from eleventy-million (well, OK, 586,386) people. And the premise, that finding these people could help lead to treatments for the diseases, is exciting.

The 13 superheroes the scientists found, however, did not give permission for their genetic information to be used in research, and they can't be identified and asked at this late date. Frustrating for the researchers, for sure.

How many of you in CR4 land have had a DNA profile done? It is easy enough now to send a swab to Ancestry.com and find out about your background. Would you give permission for your genome to be used for research? Would you do so for certain kinds of research, and with what restrictions? An interesting question and one that'll come up more often, I think.

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#1

Re: Allowing Researchers Access to Genetic Information

04/12/2016 1:26 PM

Interesting that one of the most useful human cell lines used for cancer research was taken from the patient without her permission. HeLa cells have been of value for over 60 years.

https://en.wikipedia.org/wiki/HeLa

I can't fathom a reason why these 'superheroes' would not want to contribute to research that might eradicate disease and lessen human misery. Superheroes? Harrumph.

The only genomic testing I've had done is the Oncotype DX test to optimize the course of breast cancer treatment. I'm still standing, still cleaning up the cr4wlspace.

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#5
In reply to #1

Re: Allowing Researchers Access to Genetic Information

04/12/2016 2:43 PM

The superheroes might well be willing to participate; they haven't been contacted. I gather that identifying them isn't possible. I was thinking about that yesterday after I heard the story: how were the donors' names protected from potentially unwelcome data users? I would think that there is a way back to someone who is authorized to match a control number to a name.

It's possible that the story of the HeLa cell line has had an impact on privacy. The book about the development of HeLa (The Immortal Life of Henrietta Lacks) is fascinating, both for the science and the ethical questions it raises.

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#7
In reply to #5

Re: Allowing Researchers Access to Genetic Information

04/12/2016 6:14 PM

There is a program (Dor Yeshorim) that provides anonymous testing for genetic diseases that allow couples in an early stage of a relationship to determine if they both may be carriers:

"The Brooklyn-based organization, which now offers Jewish genetic testing across the United States, Canada, Israel, and Europe, works to eliminate any chance that two carriers of the same genetic disease will even date, avoiding the heartache of having to abandon a progressing relationship, or worse, having a child with a fatal or debilitating genetic disorder. After conducting genetic screening, Dor Yeshorim assigns identification numbers that correspond to its clients' genetic data. Before or soon after meeting, potential partners exchange ID numbers and dial an automated hotline to check genetic compatibility-a phone call that almost always determines if a relationship will move forward or end."

http://www.tabletmag.com/jewish-life-and-religion/187177/tinder-for-tay-sachs

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#12
In reply to #7

Re: Allowing Researchers Access to Genetic Information

04/13/2016 10:56 AM

Interesting! I was not aware of that program.

The friend I live and work with when in southern California has been tested, and says he has twice ordered a test kit for me, but has twice misplaced it, so I have not yet been tested, but I plan on doing so.

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#9
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Re: Allowing Researchers Access to Genetic Information

04/13/2016 9:38 AM
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#11
In reply to #9

Re: Allowing Researchers Access to Genetic Information

04/13/2016 9:46 AM

BestInShow had also cited this book. I'll have to add it to the bedside stack....

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#15
In reply to #9

Re: Allowing Researchers Access to Genetic Information

04/13/2016 9:10 PM

Just picked it up for free on Amazon for Kindle.

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#14
In reply to #1

Re: Allowing Researchers Access to Genetic Information

04/13/2016 5:31 PM

Re: "Superheroes? Harrumph" did you read:

"Poignantly, the 13 may not know of their own special status"(?)

I, myself, have always felt "extra blessed", exhibiting (since childhood) both a natural immunity to smallpox, as well as a lack of any reaction to poison ivy (or poison oak).

However: I understand (as has been explained elsewhere) that such immunity in actuality represents a LOSS of genetic information, not an "evolutionary-mutational-improvement".

It saddens me to think (read: "know") that all-too-many such researchers want to make such "discoveries", in order to elevate themselves to be "as God(s)", rather than to acknowledge the extraordinary (incomprehensible!) "coding" within us, placed there by the one-and-only omnipotent/omniscient "coder" Himself.

Still, "Wishing-them-Well" in their collective endeavors...!

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#2

Re: Allowing Researchers Access to Genetic Information

04/12/2016 2:11 PM

Sounds like Marcus Corvinus...could qualify.

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#3

Re: Allowing Researchers Access to Genetic Information

04/12/2016 2:39 PM

I note the article states

"The research, he said, was only possible because people had consented to share their genetic data with scientists."

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#4

Re: Allowing Researchers Access to Genetic Information

04/12/2016 2:39 PM

I would certainly want to know if I had superhuman DNA, although most people I suspect have some idea after they have reached an advanced age and seen their parents and grandparents live a life in good health as to the probability that they have good DNA, or at least no inherited genetic weaknesses....I've had my DNA analysed for certain weaknesses by that company that formulates custom vitamin and mineral supplement formula, which claims to correct any shortcomings and ward off diseases...but discontinued after a while due to the required ingesting of some 30 large pills a day...not to mention the $200 a month cost...

I am not convinced this approach would work for developing useful drugs though, but possibly what drugs would work well with certain people with certain genetic likenesses facing similar circumstances...and perhaps more importantly which drugs might have a severe side effect or unintended consequence...I certainly would not object to the exploration of any of these avenues though...

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#6

Re: Allowing Researchers Access to Genetic Information

04/12/2016 4:39 PM

One step closer to isolating the genes that would make "super soldiers".

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#8

Re: Allowing Researchers Access to Genetic Information

04/13/2016 8:00 AM

And what is the underlaying mission of the geneticist? People do not do something because it is good for you, they do thing because they make a profit or require control of something.

And with the population of the world heading for a massive expansion, why do they require people to be disease free and live longer in a healthy state, If we domnt have water, space for crops, space for animal farming and additional resources to live a normal life.

Why does man need to upset the balance of nature? Life is a cycle which we cannot control but want to control, and nature finds ways to balance life on earth.

I agree that in some circumstances some illness can be made to be livable for people, but in the end, do we really think we are immortal?

Quite a dilemma of ethics and views, however, I don't believe for an instant that the research labs want this for the good of mankind, more for the profits and spin off.

We came from an ape like creature a few thousand years ago. How much more do we need to know about ourselves.

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#16
In reply to #8

Re: Allowing Researchers Access to Genetic Information

04/13/2016 11:35 PM

"People do not do something because it is good for you, they do thing[sic] because they make a profit or require control of something."

That statement is undoubtedly true for many people, and probably true for most organizations, which end up being run by bean counters, but I apparently have more confidence than you in the good will of most people. I personally do lots of things for the benefit of others, without much thought about direct personal benefit to myself, and I know for sure that I am not unique in that respect.

You definitely have an important point about the world population, but as long as I am reasonably healthy and can continue to provide services to others, I don't plan on contributing to population reduction. On the other hand, I've already done that by having no children (a conscious choice).

"We came from an ape like creature a few thousand years ago. How much more do we need to know about ourselves."

A whole lot more!

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#10

Re: Allowing Researchers Access to Genetic Information

04/13/2016 9:45 AM

Well, we know of one confirmed 'genetic superhero,' Ozzy Osbourne.

One of the big British Institutes (I think Cambridge) sequenced his DNA and found that his genes included an enzyme that breaks down opiates much faster than what us 'non-mutants' can do. That's why he survived all those years doing levels of drugs that would have killed 'normal' people.

There's also a story going around about one time Ozzy was going in for dental surgery, and had to be put under for the procedure.

Anistesiologist (after first dose): "How do you feel, Mr. Osbourne?"

Ozzy: "Ah feel fine, Doc, whens this supposed to kick in?"

(second dose, uncommon, but sometimes needed for larger people, or those with high tolerance)

Ozzy: "Oh, THERE'S the good stuff." (Still does not go under)

(third dose, the medical books say this is dangerous, coma-inducing levels)

Ana: "If you can hear my voice, blink twice."

Ozzy: "Why should ah do that? Ah can talk just fine."

(fourth dose, this is the dosing level most medical books call 'doctor-assisted suicide')

Ozzy: "Is this gonna take all day, Doc?"

Ana: "You're not human!"

And to think, his kids each gave a 50-50 chance of having this power too. (They haven't submitted DNA for sequencing, and from what I've heard, Ozzy is being a protective father, and lot letting his kids go down the 'dark path' of drug use. He may have survived all those years of heavy drugs, but you can't say he got out of it unscathed.)

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#13
In reply to #10

Re: Allowing Researchers Access to Genetic Information

04/13/2016 11:02 AM

Maybe Keith Richards has the same enzyme. I'm always amazed to see him looking alive and well, given that he's been rode hard and put up wet.

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#17

Re: Allowing Researchers Access to Genetic Information

04/27/2016 10:43 PM

On the condition that gene information is kept known only for researchers and permission should be granted before any other application of the gene information. Anonymous donation may be a good way to address the issue, and it will be better if the donator have the access to their own DNA profile and related result in the research. Programs for free registration to invite people who are interested can be also a good idea. The enrollers can get free information about their own gene while give permmission to the researchers on the use of their gene. Like WCP probes identification can be the topic of such programs.

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