Good news: On May 1st the House passed the Genetic Information Nondiscrimination Act (GINA) by a vote of 414 to 1. The act will protect Americans against discrimination based on their genetic information. This will apply to both health insurance and employment. The legislation has been debated in Congress for the past 13 years, so most individuals with genetic diseases and their families -- especially those parents of children with genetic illnesses -- are celebrating. This bill, additionally supported by NIH National Human Genome Research Institute, will also allow for continuation of biomedical research by eliminating the possibility for genetic discrimination. And, yes, this legislation is supported by George Bush who will sign it into law tomorrow.This issue was brought to my attention by Jen, blogger and super-active alpha1 mom. Alpha1 refers to Alpha 1-antitrypsin (A1AT) deficiency, which is a not-so-rare genetic disease. A1AT is a protein produced by the liver and its function is to protect the lungs from the enzyme neutrophil elastase (NE). When the body is deficient in its production of A1AT, the NE, a protective enzyme that will normally remove old cells or bacteria, can damage healthy lung tissue. People with the deficiency will often develop emphysema. Other common diagnoses include COPD , asthma, chronic bronchitis, bronchiectasis and more rarely cirrhosis of the liver or panniculitis. Alpha1 can be treated with augmentation therapy, drug therapy, or surgeries such as organ transplantation. You can find more clinical information about Alpha-1 here , here and genetic information here.
2 comments:
These regulations are a good idea, but there still seems to be some holes in the new laws. For instance, health information is not the only thing you can get from your DNA:
http://dnatestingguides.com/2008/05/what-is-dna-testing/
For example with the wholesale collection of DNA the government, or any company that so wished, could compile a DNA fingerprint database or trace your ancestry.
It's not clear how the new regulations would apply to this. Perhaps the best way to stop companies/governments abusing genetic information, is to not only protect the information, but not let them have it in the first place.
I agree with you; but we should be careful not to conflates issues. GINA will protect individuals with preexisting conditions from discrimination when seeking employment or health care coverage. This is the first legislation of its kind and could potentially be applicable to other conditions that may have a genetic link (for example some cancers, MS or even something like childhood asthma). So, whereas in the past cancer survivors may have had difficulty getting insured if there was a lapse in coverage, GINA has the potential to protect these vulnerable individuals and their families. GINA does not require that anyone provide DNA samples for health care coverage or employment; in fact, it protects against it.
But I appreciate the comment and will check out the link you provided. Thanks!
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