A measure that would protect Americans from discrimination by insurers and
employers due to their genetic makeup or family history has overcome a major
hurdle and passed the House of Representatives.
APA has urged Congress for many years to enact such a protective
APA Medical Director James H. Scully Jr., M.D., said in a written statement
about previous genetic discrimination legislation that such testing offers
tremendous promise in identifying existing and potential health concerns.
Without a strong, enforceable genetic privacy law, however, patients are
sometimes reluctant to participate in clinical studies that require genetic
testing, and others may forego potentially lifesaving treatment.
"Unlike other forms of bias, genetic discrimination is not based upon
an obvious, visible trait," said Sen. Olympia Snowe (R-Maine), who
cosponsored the companion measure in the Senate. "To discriminate, one
must actively seek out information on which to act."
The Genetic Information Nondiscrimination Act (HR 493) aims to prevent such
misuse. The bill, as passed by the House in April, would bar the use of
genetic information to deny a person health insurance or job opportunities.
The bill would also make it illegal for health plans or insurers to deny
coverage or charge higher premiums to healthy people based solely on a genetic
predisposition to a disease. Similarly, an employer could not use genetic
information in making hiring, firing, or promotion decisions.
The bill, which would ban discrimination based on the results of genetic
tests, protects holders of U.S. health insurance policies. According to report
by the Congressional Budget Office, one result is that more
people—currently estimated at about 600—would qualify for
individual health insurance plans, since some insurers who sell such plans are
already using genetic test results to deny coverage. The legislation would
direct the departments of Health and Human Services, Labor, and Treasury to
enforce the legislation's provisions.
Supporters of the bill said it was a necessary follow-up to the federal
government's $3.7 billion Human Genome Project, which was completed in 2003.
The bill is intended to ensure that the genetic information derived as a
result of that research would not be used against patients.
Although there have been instances of discrimination against people with
family histories of sickle cell anemia, Huntington's disease, certain cancers
and other diseases, proponents of the bill, such as APA, said the wider impact
is that concerns of abuse keep patients from screening and from participating
As evidence of the need for action, Scully cited a Department of Labor
report documenting that 63 percent of individuals surveyed said they would
refuse to take genetic tests if insurers or employers could access their
"A person's genetic information should only be used with his or her
informed, voluntary, and noncoerced consent," Scully said."
Protecting patients' genetic information is critical to providing the
highest quality medical care."
Bill supporters highlighted a recent effort by the National Institutes of
Health to offer women genetic testing for breast cancer in which nearly 32
percent declined to take it, due to concerns about health insurance
discrimination should the tests show they may be at risk.
President Bush supports such nondiscrimination legislation, and in an April
statement administration officials said concerns about unwarranted use of
genetic information threatens the utilization of existing genetic tests, as
well as future research.
The bill also would establish a Genetic Nondiscrimination Study Commission
to review the developing science of genetics and advise Congress on the need
for further action.
Genetic discrimination bills were introduced in two previous Congresses and
approved by the Senate but not taken up by the House. The Senate Health,
Education, Pensions, and Labor Committee approved similar legislation (S 358)
Sen. Tom Coburn (R-Okla.) has placed a hold on the current Senate bill.
Coburn, a physician, raised concerns that the bill could have unintended
consequences for claims processing, medical records, and information sharing
with law enforcement. He also criticized the Senate measure for failing to
prohibit discrimination against embryos that have been found to be at risk for
disease through genetic testing prior to implantation.
The U.S. Chamber of Commerce also opposes the legislation because "it
seeks to not only punish employers for discrimination using genetic
information but for collecting the data in the first place."
The legislation would require employers to obtain their workers' written
authorization before collecting such data.
Before passing HR 493, the House added a provision to bar discrimination on
the basis of genetic information derived from parents and their offspring for
preimplementation genetic diagnoses, amniocentesis, or other reproductive
testing or techniques developed in the future. To date, 43 states have enacted
laws to prohibit the use of genetic information by individual-market health
insurers. At least 30 states have laws that prohibit genetic discrimination by
Supporters said only a federal law will prevent all health plans and health
insurers in all markets from rejecting applicants, charging them more, or
excluding or limiting covered benefits based on genetic information.
Although no court cases related to mental health have been brought on the
basis of genetic discrimination, a December 2001 report in the Journal of
Medical Ethics noted a Hong Kong case in which a court ruled that it was
unlawful for the civil service to discriminate in employment against people
with a family history of mental illness.
The text of the House bill (HR 493) and the Senate bill (S 358) is posted at<http://thomas.loc.gov/>. Enter the bill code to access the text.▪