Fearing Punishment for Bad Genes ...It then goes on to explain the story of a guy to wants to commit insurance fraud by buying cheap life insurance after being diagnosed with a fatal disease.
But many people are avoiding the tests because of a major omission in the 2008 federal law that bars employers and health insurers from seeking the results of genetic testing.
The Genetic Information Nondiscrimination Act, known as GINA, does not apply to three types of insurance — life, disability and long-term care — that are especially important to people who may have serious inherited diseases. Sponsors of the act say that they were well aware of the omission, but that after a 14-year effort to write and pass the law, they had to settle for what they could get.
Dr. Robert C. Green, a genetics researcher at Harvard Medical School, studied the behavior of those who had recently learned they carried a genetic marker that predisposes them to early Alzheimer’s disease. They were five times as likely to buy long-term-care insurance as those in a control group. ...So the guy can just move to California, and cash in for millions of dollars for his heirs.
Just three states — California, Oregon and Vermont — have broad regulations prohibiting the use of genetic information in life, long-term-care and disability insurance.
The article says that medical ethicists want to expand the federal Genetic Information Nondiscrimination Act of 2008, so that it will be easier to experiment on humans:
Fear of discrimination affects research participants as well as patients. Dr. Green said that 23 out of 94 volunteers who walked away from a sequencing study did so because of concerns about insurance.The whole concept of insurance is to reduce risk by selling to a company that can spread risk over a group. If people can insure against a disaster they know is going to happen, it defeats the point. Or to use industry jargon:
Insurance industry representatives, by contrast, argue that they may need genetic information to make underwriting decisions.Obamacare is also anti-insurance, because much of it pays for routing and predictable care, like check-ups.
Barring long-term-care and life insurers from obtaining applicants’ test results “could lead to adverse selection and impact the stability of rates,” the American Academy of Actuaries said in a statement.
As for Brian S., he and his wife want to have a baby. But because he has decided not to be tested for the fatal neurological disorder, they are considering in vitro fertilization with pre-implantation genetic diagnosis.The IVF tests do not work that way. Whoever does the test will have to known whether he carries the bad gene. He can ask now to be told, but there will be a record of the result.
That would allow any embryos carrying the dreaded mutation to be silently screened out, keeping him ignorant of his own status — and able to apply for life and long-term-care insurance without fear of being turned down.
I guess they did not ask the ethicists about having a baby with a 50% chance of growing up without a father. I guess they figure millions of kids do anyway. It seems crazy to me that someone would forgo a $100 test, not learn whether he has a fatal disease, spend $20k on IVF, put his family thru misery -- all so it will be easier for him to buy a life insurance policy in the future?
DNA tests scare a lot of people. It is as simple as that. The law sill not change that. Maybe someday everyone's DNA will be sequenced at birth and attached to the birth certificate. Then maybe people will accept it.