It would also prohibit employers from requiring applicants to submit results of genetic testing. The bill now has 182 co-sponsors, but may stall before it becomes law, according to executives from the National Institute of Health. A similar bill, S306, passed the Senate by a vote of 98 to 0.
On 29 April, Dr Francis Collins, director of the National Human Genome Research Institute, wrote in a policy alert that people's fear about genetic discrimination is threatening the progress of medical research, and legislation to govern genetic testing isn't going forward because businesses that are worried about "nuisance lawsuits" are lobbying against it.
In some cases, "genomics" is already ushering in personalised medicine, he said. Oncologists can take cells from the tumour of a woman with breast cancer and use that to determine whether she needs ancillary chemotherapy after it has been removed, Collins said.
All that said, when it comes to fatal diseases, experts say some people would rather stay in the dark. "Many people just don't want to know," said Benkendorf, "so that's why they aren't taking tests."
Talkback
My 18-year-old son David Asbell, was just denied enlistment into the US Air Force. Without even getting a military physical, he was denied twice due to his family medical DNA records that show he has genetic hemochromotosis. After failing the first time we went to Birmingham Alabama and met with a highly regarded specialist in the blood disorder field, Doctor James C. Barton of Southern Hematology & Oncology. Dr. Barton evaluated my son’s condition and composed a letter to the Air Force explaining his condition in detail. He explained that his HFE genotype and iron values represent no excessive risk. He also explained the number of suspected cases that are currently in the military unknowing and having the same condition as my son.
We were fortunate to find that my son is a C282Y homozygote at the early age of 16. He realizes that regular monitoring is a must, and possibly phlebotomy or a new oral drug Exjade may be necessary to live a normal healthy lifestyle. He is currently in good health, and at present his iron levels are so low that he has never had the need of any treatment or a phlebotomy. Because of the early DNA testing that revealed his potential problem, he should never have to give blood more than 3 or 4 times each year at some point in the future, if at all.
I am outraged that medical science says or his DNA says that he has hemochromatosis, when the disease is a result of Iron overload, which he hopefully will never experience due to his advance knowledge of the potential problem. There needs to be another term for the disease or his condition so as to indicate to other unknowing medical or government agencies that it is entirely possible to avoid complications or never actually experience the end result of the disease.
Due to the blessing of our advanced awareness and now the curse of the medical terminology, my son is a far lesser liability to the military than all the unknowing troops that are subject to have problems later in life due to iron overload.
The military medical manuals concerning the disease is outdated, and does not take into consideration at all discovery of the disease in advance through genetic DNA testing. Early discovery (as in our case), of the disease, all but elimminates the risk.