From the perspective of "European" insurance... this is what you get if you let unbridled adverse selection into your market(s). Health insurance is perfectly manageable (if and only?) if you accept (some) mandatory coverage. Otherwise the market will unravel. Same for other types of coverage with medical acceptance (life, disability). Once you start on that treadmill, you will lose large parts of the market where the product / coverage would actually be most benificial in terms of utility. You do need some way of making the product work both ways (could be long term contracts, prohibition on using certain types of information, ...).<p>Example: My firms has a niche. It turns what usually is an individual disability product (where you have to have extensive medical checks up front to deal with adverse selection), into a product sold to employers for most or all employees at once (that is the key). Yes, in my country disability is a subject that employers and unions actually talk about in collective bargaining. That pretty small change takes away the adverse selection. It makes the average claim manageable, it shares burdens and keeps pricing acceptable. We are even experimenting with blank acceptance for employees who opted-out earlier. That's tricky since that brings back the adverse selection on the individual level. Still learning about how to reduce that effect, while keeping our product affordable and manageable.
An important fact (illustrated wonderfully in “Gattaca” which everyone rightly loves) is that there is not naturally any such thing as genetic privacy. If someone wants your DNA, you are constantly leaving it everywhere you go, and sequencing and checking SNPs just keeps getting cheaper and easier.<p>So genetic privacy, or at least nondiscrimination, is something we need to actively create with laws and social norms, if we want it.
You could focus on the discrimination, or you could fix the healthcare system.<p>It seems that this can only be a problem if there isn't universal access to healthcare with some form of mandatory health insurance, medicare for all, whatever system that makes healthcare a right and covers everyone regardless of pre existing conditions and economic situation.
Who could have predicted this...<p>I still remember the discussion on this very forum years ago when these cheap DNA services opened and it was about 50/50 between people saying there was no risks and people saying we were opening pandora's box.
I also think this may depend upon the State you live in. At this moment of time, I expect Bill lives in a Red State.<p>But as time goes on, I can see this spreading to all States as the US continues on with Privatizing Medical Care.<p>With the new incoming admin., I expect this will get worse. Not that the Current administration did a great deal fix health care for the US. He did lower some drug costs for Medicare, but nothing for other people.
Did you know you can buy an Oxford Nanopore sequencer for about $2000 euro? It sits on your desk and it will sequence DNA or RNA at about 450 bases per second<p><a href="https://nanoporetech.com/platform/technology" rel="nofollow">https://nanoporetech.com/platform/technology</a><p>It somehow grabs a free strand of DNA\RNA and pulls it through a specially constructed pore on a membrane. It reads the voltage change as it goes through because each type of base (ATGC) changes the voltage differently, and interprets the sequence and outputs the data in a file.<p>Doesn't even need PCR amplification because it reads a single strand.<p>I thought it must be fake because it sounds like something out of science fiction but Nature did an article:<p><a href="https://www.nature.com/articles/s41587-021-01108-x" rel="nofollow">https://www.nature.com/articles/s41587-021-01108-x</a><p>Mind blowing
> In 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law, ensuring that employers couldn’t decide to hire or fire you, and health insurers couldn’t decide whether to issue a policy, based on DNA. But lawmakers carved out a host of exceptions. Insurers offering life, long-term-care, or disability insurance could take DNA into account. Too many high-risk people in an insurance pool, they argued, could raise prices for everyone. Those exceptions are why an insurer was able to deny Bill a long-term-care policy.<p>Technically Gattaca is off the table at least for health insurance and employment.
Since this is focusing on US law: You cannot be denied health insurance based on the outcome of a genetic test, even in the pre-ACA days. Back before the ACA, you COULD be denied insurance once you have a manifest disease (which would then be considered a pre-existing condition.)<p><a href="https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act" rel="nofollow">https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...</a><p>However, "The law does not cover life, disability, or long-term care insurance, which may cause some reluctance to get tested."
> Bill’s family had always thought it was a freak coincidence that his father and grandfather both had ALS.<p>Bill's family isn't too bright.<p>> An ALS specialist ordered Bill a DNA test.<p>... and Bill took it, which shows that Bill isn't too bright either.
I must confess this does not seem to be a problem to me. Private insurance is not meant to be a welfare product. It is meant to be a risk transfer. In a competitive market the expected value should be slightly negative to the consumer as the insurance company needs to make a reasonable profit. An important aspect of the transaction is information symmetry. If you knew you had a terminal disease and only 3 months to live and could buy a $1 million life insurance policy after finding out the information and had no obligation to share the diagnosis with the insurance company, life insurance companies would all go bankrupt. If they raised their rates high enough to cover this scenario, non-terminally ill people would never be able to afford it (significantly negative expected value). This is the same issue with health and long term insurance. Once the genetic test is completed and the individual realizes they have a higher chance of getting ALS, the rate for their specific insurance should go up. They have a greater chance of having it pay out.<p>Any other method either leads to bankrupt insurers. In my opinion, what Bill should have done is bought the long term care BEFORE he had the genetic test done.