Welcome to Genetic Dystopia
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.