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."

Re:How would this affect insurance?

[Bob54321]

Yes you would. Currently when going for health insurance you have to inform the company about all pre-existing conditions and even familial medical history. That way they can charge you the right amount relative to the risk they have of paying out. That is how insurance works. If you know you had a genetic defect, it will be required you tell them - you would expect a discount if you have tested negative so expect to pay more if you test positive. On the other hand, if you haven't been tested, and don't want to, then the insurance should not be able force you to take one. Some countries have laws preventing this but many countries still need to deal with that eventuality. It may take a while and, from a practical perspective, it still is only a minor issue at this time.

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:This is a major issue...

[FooAtWFU]

Don't be silly. Star Trek still has plenty of religion:

New Age mysticism: Oddly enough, while Christianity has apparently been wiped out, popular New Age ideas such as transcendental meditation, seances, tribal superstitions, pseudoscientific quasi-religions and Eastern spirituality are all acceptable in the Federation. This would seem rather contradictory until you ask yourself what kinds of spirituality are popular today in Hollywood. Apparently they don't believe that God made Man in his own image, but they do believe that Hollywood should remake mankind in its image.

This spiffy essay [stardestroyer.net] sets out to demonstrate that "the writers and producers of Star Trek are promoting the values and ideals of communism .... .... (If you think communism is wonderful, I guess that means you'll love this aspect of Star Trek. If you think it's terrible, I guess this means you'll hate this aspect of Star Trek.)" The site has a number of other spiffy essays on sci-fi and other issues in Star Trek as well.....

Re:Human Ethics/Disease

[Coleco]

3) Form highly publicized media outlets and channels to scrutinize this work being done so that the general public is kept informed on the progress of cures for these diseases.

Any medical team or individual who comes up with such a cure shuld be treated as a "rock star" and a foot note should be made in the history books of this individuals name.

I agree with everything you said but in particular this is an insightful statement. I'm not sure how it is in the states but there's not a lot of incentive to go into biotech here (in Canada). The pay is really crappy and there's not a lot of jobs. If I want to become a researcher now I have the option to go to grad school and get paid $18k a year for 5 years, of which school fees will come out of during that time. After that you make decent money, but your wages probably never will be commensurate with your training. One could make far more in computing with less time/money/effort.