Welcome to Genetic Dystopia


NOTE:

As per usual, I've misunderstood what the links were provided in the articles - GINA already is law. What is proposed will change it substantially. Here's the Wikipedia cheat sheet on current law

I saw a tweet linking a BoingBoing article which linked to a reality to which I did not think we had quite yet sunk. Apparently, I have not been thinking as expansively as the overlords.

Business Insider tells more:

The bill, HR 1313, was approved by a House committee on Wednesday, with all 22 Republicans supporting it and all 17 Democrats opposed. It has been overshadowed by the debate over the House GOP proposal to repeal and replace the Affordable Care Act, but the genetic testing bill is expected to be folded into a second ACA-related measure containing a grab-bag of provisions that do not affect federal spending, as the main bill does.

"What this bill would do is completely take away the protections of existing laws," said Jennifer Mathis, director of policy and legal advocacy at the Bazelon Center for Mental Health Law, a civil rights group. In particular, privacy and other protections for genetic and health information in GINA and the 1990 Americans with Disabilities Act "would be pretty much eviscerated," she said.

Employers got virtually everything they wanted for their workplace wellness programs during the Obama administration. The ACA allowed them to charge employees 30 percent, and possibly 50 percent, more for health insurance if they declined to participate in the "voluntary" programs, which typically include cholesterol and other screenings; health questionnaires that ask about personal habits, including plans to get pregnant; and sometimes weight loss and smoking cessation classes. And in rules that Obama's Equal Employment Opportunity Commission issued last year, a workplace wellness program counts as "voluntary" even if workers have to pay thousands of dollars more in premiums and deductibles if they don't participate.

Apparently, as long as employers present this as 'voluntary' (although they can make HUGE penalties for those who do not comply) it would be legal. The companies who collect this information can then sell it of course. No privacy limitations - sky's the limit of what can be done commercially with that information linked to that person... and their family.

We think the Muslim ban is horrifying (it is!) - this could lead to similar targeting for those with genetic/medical issues of ANY kind. Welcome to Dystopia.

BoingBoing also links PLOS where we learn the bill is named Genetic Information Nondiscrimination Act, already known by it's cute nickname, GINA. Don't be afeared - this is the from the 'help' page (gawd, we are ALL going to need help, and more than a stiff drink for this one):

What is GINA?
The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals from genetic discrimination in health insurance and employment. Genetic discrimination is the misuse of genetic information. This resource provides an introduction to GINA and its protections in health insurance and employment. It includes answers to common questions and examples to help you learn. Choose from one of the boxes to the left to begin!

The GINA website appears to explain 'protections,' but this is sheer craziness - the companies which track this info will be free to sell it to one another. And there is literally no limit to what can be done with this information. It will be used to market to us for issues we may not yet know we have, and of course it will be used to deny us insurance coverage since we can be pegged as liabilities.

Genetics may not be prophetic in the world we have come to know until now, but it will be in the marketplace of things and data. It's getting wild out there - be safe.

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Comments

Corporations certainly don't.
And corporate Democrats don't either.

It'll take a non-pro-capitalist revolt by the masses to reclaim our liberties, and that means tearing down the Church of the Free Market first.

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22 users have voted.
MsGrin's picture

@gjohnsit Only privacy when it comes to their finances or other proprietary data (our data is no longer proprietary).

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9 users have voted.

'What we are left with is an agency mandated to ensure transparency and disclosure that is actually working to keep the public in the dark' - Ann M. Ravel, former FEC member

@MsGrin

http://news.nationalgeographic.com/news/2005/10/1013_051013_gene_patent....

One-Fifth of Human Genes Have Been Patented, Study Reveals
Stefan Lovgren
for National Geographic News
October 13, 2005

A new study shows that 20 percent of human genes have been patented in the United States, primarily by private firms and universities.

The study, which is reported this week in the journal Science, is the first time that a detailed map has been created to match patents to specific physical locations on the human genome.

Researchers can patent genes because they are potentially valuable research tools, useful in diagnostic tests or to discover and produce new drugs.

"It might come as a surprise to many people that in the U.S. patent system human DNA is treated like other natural chemical products," said Fiona Murray, a business and science professor at the Massachusetts Institute of Technology in Cambridge, and a co-author of the study. ...

... The new study reveals that more than 4,000 genes, or 20 percent of the almost 24,000 human genes, have been claimed in U.S. patents.

Of the patented genes, about 63 percent are assigned to private firms and 28 percent are assigned to universities.

The top patent assignee is Incyte, a Palo Alto, California-based drug company whose patents cover 2,000 human genes.

"Gene patents give their owners property rights over gene sequences—for example in a diagnostic test, as a test for the efficacy of a new drug, or in the production of therapeutic proteins," Murray said.

http://news.nationalgeographic.com/news/2005/10/1013_051013_gene_patent_...

One-Fifth of Human Genes Have Been Patented, Study Reveals

"While this does not quite boil down to [the patent holders] owning our genes … these rights exclude us from using our genes for those purposes that are covered in the patent," she said.

Specific regions of the human genome are "hot spots" of patent activity. Some genes have up to 20 patents asserting rights to how those genes can be used. ...

... But critics caution that patents that are very broad can obstruct future innovations by preventing researchers from looking for alternative uses for a patented gene.

"You can find dozens of ways to heat a room besides the Franklin stove, but there's only one gene to make human growth hormone," said Robert Cook-Deegan, director of Duke University's Center for Genome Ethics, Law, and Policy.

"If one institution owns all the rights, it may work well to introduce a new product, but it may also block other uses, including research," he said. ...

Although the response of one geneticist was '..."The marketplace will now be open." ...' and I think it's rather worse than pathetic to speak of 'market-places' and 'consumers' where health care is concerned. Also, what's with people speaking of 'cancer genes'? Such things as irreparable/improperly repaired genetic damage/epigenetic attachments altering functionality produce the potential for disease, do they not?

http://www.usatoday.com/story/news/nation/2013/06/13/supreme-court-gene-...

Richard Wolf, USA TODAY Published 10:28 a.m. ET June 13, 2013 | Updated 4:31 p.m. ET June 13, 2013
Supreme Court decision is a win for women with genetic risk of breast and ovarian cancers, as well as geneticists and researchers who had criticized a Utah company's exclusive patent.
Breast cancer gene

WASHINGTON — The Supreme Court ruled Thursday that human genes cannot be patented, a decision with both immediate benefits for some breast and ovarian cancer patients and long-lasting repercussions for biotechnology research. ...

... But the court held out a lifeline to Myriad Genetics, the company with an exclusive patent on the isolated form of genes that can foretell an increased genetic risk of cancer. The justices said it can patent a type of synthesized DNA that goes beyond extracting the genes from the body.

Justice Clarence Thomas wrote the decision for a unanimous court. "Myriad did not create anything," Thomas said. "To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention."

The decision will allow other scientists and laboratories to provide genetic diagnostic testing, now that the patent on the BRCA1 and BRCA2 genes themselves has been lifted. That should lead to lower costs and greater access.
ADVERTISING

"It is splendid news for patients, for physicians, for scientists and for common sense," Mary-Claire King, the geneticist who in 1990 discovered the abnormality on chromosome 17 that proved to be the breast cancer gene, told USA TODAY. "The marketplace will now be open."

Myriad emphasized the bright side of the decision for the company — that cDNA, which is not naturally occurring, remains patentable. As a result, it said, 24 patents containing more than 500 valid claims remain in effect. ...

Oddly, page two appears to be a repeat of page 1... however, this indicates some of the potential for problems permitted in a culture where 'your money or your life' is the choice presented to sick and injured citizens. And this is important!

https://www.forbes.com/sites/danielfisher/2013/06/13/supreme-court-rejec...

Sun 13, 2013 @ 11:06 AM 29,763 views
The Little Black Book of Billionaire Secrets
Supreme Court Rejects Human-Gene Patents -- Sort Of

Daniel Fisher ,

Forbes Staff

I cover finance, the law, and how the two interact.

Opinions expressed by Forbes Contributors are their own.
English: Clarence Thomas, Associate Justice of...

Thomas: No patents on natural DNA (Photo credit: Wikipedia)

The U.S. Supreme Court today declared human genes off-limits for patent protection, drawing a line between "naturally occurring" DNA sequences and similar genes entirely created in the lab. ...

... By making a distinction between "natural" DNA and a lab-created synthetic version called complementary DNA, however, Justice Clarence Thomas may have seized on a distinction that will be difficult to maintain over the long run.

"It's one of these situations where candidly, it just makes me sad there isn't a higher level of basic biology knowledge in the world," said Brenda Jarrell, a Ph.D biochemist and partner with at Choate, Hall & Stewart in Boston. "Unfortunately, this is the Supreme Court." ...

... The decision comes down to what one commentator has said should be the guiding question for patent examiners: "What did you do with your hands?" In identifying specific gene sequences, Myriad didn't actually create anything, Thomas said. ...

... He also rejected the idea that by isolating the gene and separating it from the surrounding chromosome, Myriad had created something new. The U.S. Court of Appeals for the Federal Circuit approved approved Myriad's "natural" BRCA genes, with one judge saying they were patentable because the act of isolating them cleaved chemical bonds linking them to the rest of the chromosome.

Thomas rejected that argument, saying it wasn't enough to overcome the rule against patents on naturally occurring things. The Federal Circuit is a specialized court for patent appeals, but the Supreme Court has overruled it in several significant cases recently where it felt judges there had been too accomodating to patent owners.

The high court agreed with the Federal Circuit that cDNA is patentable, which was also the stance of the U.S. government. The reasoning is cDNA requires actual work in the laboratory and inverts the normal process found in nature. The synthetic DNA is an edited version of a gene, stripped of non-coding regions. The court said that makes cDNA "not naturally occurring."

Critics say even the edited sequences are directly analogous to naturally occurring DNA. "That may be so," Thomas wrote, "but the lab technician unquestionably creates something new when cDNA is made."

Jarrell, who has a doctorate in biochemistry from the University of California in addition to a Harvard Law degree, said Thomas is wrong. Not only do researchers make cDNA with naturally occurring tools, but the exact same process can occur naturally in the body.

"It's not actually correct to say cDNA is not a product of nature," she said. "There's nothing more inventive about making cDNA than isolating DNA."

The DNA/cDNA distinction also could provide grist for future litigation, since cDNA is a gene sequence consisting only of exons, or nucleotides that code for amino acids.

"What if you took that same cDNA sequence and added non-functional introns?" asked Dalila Argaez Wendlandt, a partner with Ropes & Gray. Would that allow for a successful end-run around the patent?

Thomas was careful to state what the decision is not about. It doesn't concern method patents covering novel new ways to isolate genes. Nor does it concern novel ways of applying genes for treatments. He even held out hope for inventors who alter the order of naturally occurring DNA sequences.

"We merely hold that genes and the information they encode are not patent eligible ...simply because they have been isolated from the surrounding genetic material," he said.

Justice Antonin Scalia gave the faintest hint of concern in a concurrence, where he said he agreed with the judgment but couldn't sign off on the heavily technical parts of the opinion. "I am unable to affirm those details on my own knowledge or even my own belief," he said, although he agreed with the distinction between sequences taken exactly from nature and cDNA synthetically created in the lab.

Jarrell, who represents biotechnology companies, said she worries the decision will introduce more uncertainty into the patent system as examiners try to determine what they are blocked from considering for a patent and what might still be eligible. "It is a valuable discovery to figure out what gene sequences make you susceptible to breast cancer and which ones don't," she said, but patents based merely on those sequences are probably now barred. ...

... Gaede said biotech companies want to patent gene sequences because simply having a patent on a method offers less protection. Rivals can manufacture products according to the method overseas, where U.S. patent law doesn't reach, he said, whereas owners could block those products from coming into the country if they also have a patent on the sequence. ...

Sooooo, it can be guessed what's coming there. And this whole pathology is making me sick.

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Psychopathy is not a political position, whether labeled 'conservatism', 'centrism' or 'left'.

A tin labeled 'coffee' may be a can of worms or pathology identified by a lack of empathy/willingness to harm others to achieve personal desires.

MsGrin's picture

@Ellen North Breast Cancer and Lyme Disease
I've casually known about this topic from what's been in the media about the brca breast cancer gene (which substantially obstructed folks from being able to be tested for it), and how the issue of patenting genes created a hot mess for folks either with Lyme or those trying to study it.

The video is from the documentary Under Our Skin about Lyme disease:

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'What we are left with is an agency mandated to ensure transparency and disclosure that is actually working to keep the public in the dark' - Ann M. Ravel, former FEC member

@Ellen North
patents are not supposed to apply to stuff that is "obvious to a skilled practictioner of the art", and any bonehead in a wetlab knows how to "design" primers -- i put "design" in quotes because the usual approach is to have idiot-proof software do the "inventing" -- that will enable you to produce cDNA from a given sequence of DNA (or RNA). it's sort of like saying you can't patent a log, but you can patent a 2x4.

that said, Thomas's decision was better than i would have imagined at the time.

the reality on the ground -- and i know VERY particularly whereof i speak, even as i write i'm running background jobs that are analyzing RNA sequences -- is that the average patent involving any genetic sequence is epistemological nonsense. the language that the lawyers use is scientifically meaningless and puts impossible constraints on everybody everywhere doing any work with DNA or RNA. For example some patents assert that any process that creates certain sequences is by definition in violation of the patent, regardless of whether those sequences are of any interest or value in the "violating" process -- they might even be annoying byproducts or "noise", and it may be impossible to prevent those sequences from being created!

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Sigh

@UntimelyRippd

Thank you so much!

One of the many great things about here is that there's generally a sane 'insider' from just about any field who knows such details,which are certainly much appreciated!

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0 users have voted.

Psychopathy is not a political position, whether labeled 'conservatism', 'centrism' or 'left'.

A tin labeled 'coffee' may be a can of worms or pathology identified by a lack of empathy/willingness to harm others to achieve personal desires.

@Ellen North
some sequence-based patents are currently written in such a way that if someone had a patent on 2x4 lumber, and you had a system set up to produce 4x4 lumber, with the inevitable result that an occasional 2x4 was produced as the wastage after you had taken all the 4x4s from a log, your process would be in technical violation of the 2x4 patent, even if you just put the resulting 2x4s into a chipper.

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Sigh

Do the articles say who lobbied for (wrote) the bill?
I thought employers were overreaching by asking for prospective employees' passwords and credit histories.

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MsGrin's picture

@on the cusp but here's what it says about the GINA web page:

This online resource was created by Genetic Alliance, the Genetics and Public Policy Center at the Johns Hopkins University, and the National Coalition for Health Professional Education in Genetics through funding by The Pew Charitable Trusts. May 2010.

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6 users have voted.

'What we are left with is an agency mandated to ensure transparency and disclosure that is actually working to keep the public in the dark' - Ann M. Ravel, former FEC member

A new form of discrimination with everyone's genetic info at their fingertips. This info will definitely be used against us from everything to hiring,promotions,pay and insurance.It will be the new definition of Survival of the Fittest.

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15 users have voted.

@pro left Just stepping back for a moment, thinking this through...
Do these Republicans understand that future elected officials that ever worked for a corporation will have their genetic histories available for public view?
Add that to the NSA possessing every tweet, text, or browser history and you have yourself a future for blackmail.
That's the ticket for a compliant government, amirite?

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@on the cusp

Lol, since they worked for a corporation, their genes will be designated as 'confidential business information' - like such things as the composition of fracking pollutants in people's drinking water (and fracking fluid used to water California crops, since polluting industry are the No. 1 important American 'Interest' and their maximized profits must come before life itself, even under fossil-fuel-created drought conditions) and the contents and functions of corporate-supplied electoral machines.

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0 users have voted.

Psychopathy is not a political position, whether labeled 'conservatism', 'centrism' or 'left'.

A tin labeled 'coffee' may be a can of worms or pathology identified by a lack of empathy/willingness to harm others to achieve personal desires.

"And that," put in the Director sententiously, "that is the secret of happiness and virtue— liking what you’ve got to do. All conditioning aims at that: making people like their unescapable social destiny.":

The Director in chapter 1. After genetic engineering, social conditioning is the most important way for the government to enslave its people. The different caste members are conditioned to never yearn for a life other than their own. This is the second major instrument of social stability.

~Aldous Huxley A Brave New World.

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Alligator Ed's picture

@LaFeminista @LaFeminista and already has. Think about "public relations", a nice term for propaganda. Think also about the skewed, incomplete history lesson taught in most schools. The there is the impending involuntary "brain hacking" which will out perform the cruder attempts at "social engineering" than those already tried.

Genetic engineering of course is most applicable in utero or in vitro with modified eggs and/or sperm. This would be technically orders of magnitude more expensive and more socially repugnant than more "public relations".

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SnappleBC's picture

Sure, it's dystopian and horrific. But that's not really a surprise when you live in a dystopian era. I pretty much read this and said, "Yeah, that's expected."

For me the real battle-ground is cultural not political. We've lost the political war entirely... top to bottom, left to right. "We the people" have been routed from the field. Daily atrocities are to be expected. So my focus is more on seeing if I can get people to recognize the enemy and pull together enough to fight.

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A lot of wanderers in the U.S. political desert recognize that all the duopoly has to offer is a choice of mirages. Come, let us trudge towards empty expanse of sand #1, littered with the bleached bones of Deaniacs and Hope and Changers.
-- lotlizard

detroitmechworks's picture

Essentially, they call it a "Discount" for "voluntary participation."

It's not technically a "Penalty". It's just the regular price, without the discounts.

The net result is the same, but somehow the blackmail is palatable because they're being generous, supposedly.

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I don't Blame Christians. I Blame Stupid. Which Sadly, is a much more popular religion these days.

MsGrin's picture

@detroitmechworks @detroitmechworks Xactly. Before I qualified for Medicare, I was aware that I was ineligible to change jobs because it would threaten the health insurance I had through a job where I was working for extremely difficult people (I had a VERY expensive pre-existing condition and this was decades before ACA).

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'What we are left with is an agency mandated to ensure transparency and disclosure that is actually working to keep the public in the dark' - Ann M. Ravel, former FEC member

Alligator Ed's picture

would be that every human, within the grasp of mandatory blood testing would be forced to pay patent royalties on the genes they were born with because they are now patentable. In fact, one could envision warrants being court-issued for people who haven't had their genomes checked, regardless of employment.

Social consequences of seemingly innocuous changes can have more severe unintended consequences than the original change intended.

It's all part of the political paradigm of Letting-The-Genie-Out-Of-The-Bottle.

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