In an important blow to the eugenics movement, President George Bush yesterday signed into law a bill preventing health insurance companies and employers from discriminating against born or unborn individuals on the basis of genetic information.”It protects our citizens from having genetic information misused, and this bill does so without undermining the basic premise of the insurance industry,” said Bush of the Genetic Information Nondiscrimination Act (GINA).
Proponents of the GINA have expressed fears that healthy individuals with genetic dispositions toward certain diseases could end up paying more for insurance. They also fear that employers would only hire or retain individuals without genetic dispositions towards disease in order to avoid future instances of an unhealthy workforce.
The version of the GINA signed yesterday included important language protecting families from discrimination based upon genetic abnormalities found in their unborn children or in those they were about to adopt.
Michigan Rep. Bart Stupak and his staff worked to insure that both the “embryo” and “fetus” were protected from discrimination based upon genetic information. Stupak and company also insured that soon-to-be adopted children were considered part of the family, and thus also protected from genetic discrimination.
Without important pro-life language, women could have lost health care benefits or even their jobs for refusing to abort a child found to have a genetic disorder during prenatal screening.
The signed version of GINA “provides some very important protections for all Americans who believe that the ‘pick of the litter’ approach should not be applied to human beings,” said National Right to Life Legislative Director Douglas Johnson.
Concerns about genetic discrimination emerged with the advances of human genome project.
In March of 2003, Nobel Prize-winning scientist Sir Paul Nurse warned about the new opportunities for discrimination genetic research allowed. He predicted that within two decades the genetic code of every baby could be recorded.
Nurse decried a possible “genetic apartheid” in which employers and insurance companies excluded individuals based upon their susceptibility to certain diseases.
Leading GINA advocate the National Human Genome Research Institute, contends that fears about genetic discrimination also hinder genetic research directed towards treating disease.
“Public fears about genetic discrimination mean that many individuals do not participate in important biomedical research at the NIH. Many patients also refuse genetic diagnostic tests that help doctors identify and treat diseases: they worry that they will lose their health insurance if it is proven that they are genetically pre-disposed to a disease,” stated NHGRI on its website.
2001 witnessed the first lawsuit involving claims of genetic discrimination. Burlington Northern Santa Fe Railroad employees were secretly tested for a genetic condition tied to carpal tunnel syndrome, as well as for diabetes and alcoholism.
The Equal Employment Opportunity Commission argued that the tests violated the Americans with Disabilities Act by considering non-job-related conditions and could lead to discrimination against individuals based upon disability.
The Council for Responsible Genetics details numerous accounts of genetic discrimination in its position paper on the subject (http://www.gene-watch.org/programs/privacy/genetic-disc-position.html). In one case, a social worker named Kim was fired from her job shortly after revealing that her mother had died Huntington’s disease and that she herself had a %50 chance of developing the same fatal disease.
Opponents of the GINA, fear that such legislation could spark a wave of frivolous litigation and force employers to offer health coverage for a host of genetically-related conditions.
Litigation and expanded health coverage fears have not prevented the GINA from receiving bipartisan congressional support. In the House, the 2007 version of the bill passed 420-3. The bill then passed the Senate 95-0 late last month.
See related LifeSiteNews.com coverage:
Scientist Warns of Genetic Discrimination