For Release: Immediately
Contact: HHS Press Office
(202) 690-6343
DOL Press Office
(202) 693-8666
New Rules Protect Patients' Genetic Information
Individuals' genetic information will have greater protections through
new regulations issued today by the U.S. Departments of Health and Human
Services (HHS), Labor, and the Treasury.
The interim final rule will help ensure that genetic information is not
used adversely in determining health care coverage and will encourage
more individuals to participate in genetic testing, which can help
better identify and prevent certain illnesses.
"Echoing the late Senator Ted Kennedy, our efforts to protect Americans
undergoing genetic testing from having the results of that testing used
against them by their insurance companies is one of the 'first major new
civil rights' of the new century," said HHS Secretary Kathleen Sebelius.
"Consumer confidence in genetic testing can now grow and help
researchers get a better handle on the genetic basis of diseases.
Genetic testing will encourage the early diagnosis and treatment of
certain diseases while allowing scientists to develop new medicines,
treatments, and therapies."
The interim final rule with request for comments and the notice of
proposed rulemaking implement Title I of the Genetic Information
Nondiscrimination Act of 2008 (GINA). Under GINA, and the interim final
rule, group health plans and issuers in the group market cannot:
increase premiums for the group based on the results of one enrollee's
genetic information; deny enrollment; impose pre-existing condition
exclusions; or do other forms of underwriting based on genetic
information. In the individual health insurance market, GINA prohibits
issuers from using genetic information to deny coverage, raise premiums,
or impose pre-existing condition exclusions.
Further, under GINA and the new interim final regulations, group health
plans and health insurance issuers in both the group and individual
markets cannot request, require or buy genetic information for
underwriting purposes or prior to and in connection with enrollment.
Finally, plans and issuers are generally prohibited from asking
individuals or family members to undergo a genetic test.
"Today's genetic technologies yield data that are vital to helping
Americans make personal, medical decisions. It is essential that we
protect such information and ensure it is not misused by health plans or
insurers," said Labor Secretary Hilda L. Solis. "The rules issued today
protect individuals against the unwarranted use of information related
to their personal health because no one should have to fear that
disclosure of their medical data will put their job or health coverage
at risk."
Additionally, HHS, through its Office for Civil Rights (OCR), issued a
notice of proposed rulemaking with a 60-day comment period, to propose
changes to the Health Insurance Portability and Accountability Act
(HIPAA) Privacy Rule to prohibit health plans from using or disclosing
genetic information for underwriting purposes.
The proposed rule published today modifies the HIPAA Privacy Rule
pursuant to GINA Title I to clarify that genetic information is health
information and to prohibit the use and disclosure of genetic
information by covered health plans for eligibility determinations,
premium computations, applications of any pre-existing condition
exclusions, and any other activities related to the creation, renewal,
or replacement of a contract of health insurance or health benefits. In
combination with the new penalties for violations of the HIPAA Privacy
Rule, as provided for by the American Recovery and Reinvestment Act of
2009, a use or disclosure of genetic information in violation of the
HIPAA Privacy Rule could result in a fine of $100 to $50,000 or more for
each violation.
Please visit
http://www.federalregister.gov/OFRUpload/OFRData/2009-22504_PI.pdf to
view the new regulations and www.dol.gov/ebsa for more information
about them. For additional information on the OCR notice of proposed
rulemaking, please visit: www.hhs.gov/ocr/privacy.
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