Despite new law, genetic discrimination fears remain

Most people have heard about the growing role of genetics as a determining factor, or fears that it will be, but The Post and Courier takes the story one step further. The newspaper tells the story of Marvin Sineath, a fairly normal 61-year-old who likes to tell stories and fought in Vietnam. But he also has a genetic disorder that has led to chronic obstructive pulmonary disease, emphysema, chronic bronchitis, and asthma.

The Post and Courier tells the story:

Sineath has a genetic disorder called alpha-1 antitrypsin deficiency, in which a defective Alpha-1 protein can lead to lung and liver disease.


"Being an athlete all my life helped," Sineath said of his diminishing lung capacity. But it's also a part of his life that's peeled away, sport by sport.

Sineath's story illustrates a greater issue: that of genetic knowledge and discrimination. Knowing that you have a genetic disorder can help you prepare for the worst, but it can also lead to discrimination by insurance providers and employers. The Post and Courier continues:

To stop the cycle of fear and failure to get treatment, Sineath, along with all the major Alpha-1 organizations and the American Lung Association, vigorously petitioned legislators to vote for the Genetic Information Nondiscrimination Act.

President Bush signed the bill into law Wednesday ... But until the legislation is tested in court, many remain wary.

No one really knows how well the law will work at this point, because once the knowledge is out there, it's hard to take back. And furthermore, many don't want the knowledge.

Genetic testing is one of those things that can affect us all, whether you have a genetic disorder or know someone who does, or maybe it's just the fact that we live in a time in which it could be determined at any moment that we have such a disorder.

Is it better to know or not? You can share your thoughts below.

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