Life with a Lethal Gene

charles robert darwin writes "The New York Times is running a story on young people who are choosing to get genetic tests for conditions like Huntington's Disease that develop relatively late in life. Apparently, while a genetic test for HD has been around for a while, very few people who have a parent with the disease choose to take the test. This story focuses on a young woman who did and tested positive. The piece follows her as she deals with the consequences. '...as a raft of new DNA tests are revealing predispositions to all kinds of conditions, including breast cancer, depression and dementia, little is known about what it is like to live with such knowledge.' With the HapMap and the $1,000 genome, this is something we are all going to face in one way or another very soon, and we really need to start thinking about it."

Comments

How would this affect insurance?

[Rix]

Would one be obliged to inform insurance companies of this "pre-existing" condition. If so, it seems one would probably be better off not knowing.

Re:How would this affect insurance?

[ubernostrum]

Would one be obliged to inform insurance companies of this "pre-existing" condition. If so, it seems one would probably be better off not knowing.

I used to work at a health-insurance company (customer service and claims processing, it was my first job out of college), so I feel like I should point out that "pre-existing condition" is (in the US, at least) a phrase with a very precise legal definition, and doesn't include a lot of things people commonly think it does.

If you seek out insurance as a private individual, then the prospective insurer can choose not to provide you with any coverage for pretty much any reason they like, and many will if you have an expensive ongoing condition, but group health plans offered through an employer are not permitted to deny coverage -- if insurance is offered to one employee in a given class (usually full-time employees), it must be offered to all employees in that class.

Once you have coverage, there are strict laws regarding what claims may be denied due to pre-existing conditions, and when:

• Once your coverage starts with an insurer, they can investigate claims to determine whether they are related to a pre-existing condition. In order to deny payment of a claim for a pre-existing condition, that specific condition must have been actively treated at some point during the six months immediately prior to the beginning of your coverage. "Active treatment" doesn't mean "diagnosed" or "mentioned", it means that a licensed medical practictioner was carrying out medical procedures and/or prescribing medication specifically for the treatment of that condition[1]. Treatment which took place more than six months prior to the beginning of coverage cannot be used as evidence of a pre-existing condition.
• After twelve months with an insurer (or eighteen months if you're on a group plan and were a "late enrolee"), the insurer is no longer permitted to deny any claims due to pre-existing conditions.
• If, prior to the beginning of your coverage with your current insurer, you had coverage with another insurer, and there was no period between the two in which you were uninsured or that period was less than 63 days long, then the time in which your new insurer can deny claims for pre-existing conditions is reduced by the length of time you had continuous coverage through your previous insurer. If your prior coverage was longer than 12 or 18 months (depending on your time of enrollment), then your new insurer is not permitted to deny claims for pre-existing conditions. To facilitate this, your previous insurer is required by law to provide you with a "certificate of creditable coverage" indicating the duration of your coverage with them.
• Claims related to pregnancy can never be denied due to a pre-existing condition, regardless of circumstances.

Additionally, many insurers won't bother investigating on claims where common sense says it wasn't a pre-existing condition; so, for example, if you accidentally slice your thumb while chopping onions for dinner, the insurer will probably go ahead and pay the claim. Any sort of sudden/acute onset condition or accidental illness/injury will usually get this treatment, because investigating pre-existing conditions is expensive and time-consuming, and it doesn't make any sense to waste time and money when you know how it'll turn out anyway.

One of the biggest causes of misunderstanding is the insurer's investigation of a condition -- the claim will be put on hold, and the doctor or facility listed on the claim will be asked for records of treatment of that condition during the six-month "lookback" period, as well as information about any other doctors or facilities who may have treated the condition. If the insurer receives no response to those requests, then the insurer is permitted to initially deny the claim (any time there's insufficient information to determine benefits, an insurer can deny the claim un

Re:Ignorance is bliss

[pchan-]

Why? If I knew I was going to die in 5 years, I wouldn't bother saving for retirement, or trying to get ahead in my career, or buying a house, or not getting that really nice sports car that I talked myself out of. I also wouldn't have any children if I would be passing on the disease to them, or just leaving them without a parent, for that matter.

I would also probably be bummed out for a while. But on a long enough scale, we are all dead.