Health Law

Federal Law Passed to Protect Use and Disclosure of Genetic Information

By Helen Oscislawski

ScienceDaily reports today that the U.S. Senate approved the Genetic Information Nondiscrimination Act of 2008 (GINA) yesterday, April 24, 2008, by unanimous consent of an amended version of H.R. 493, which passed the House last April 25, 2007 by a vote of 420-3.  The House is expected to take up the measure again quickly before sending it to President Bush to sign into law.  A copy of amended H.R.493 can be viewed on the Library of Congress’ Thomas website. 

Among other things, GINA directs the Secretary of DHSS to revise the HIPAA privacy regulation, within 60 days after the date of the enactment  of GINA, to include the following:

(a)(1) Genetic information shall be treated as health information described in [HIPAA].

     (2) The use or disclosure by a covered entity that is a group health plan, health insurance issuer that issues health insurance coverage, or issuer of a medicare supplemental policy of protected health information that is genetic information about an individual for underwriting purposes under the group health plan, health insurance coverage, or medicare supplemental policy shall not be a permitted use or disclosure. . . . .

(d) Enforcement - In addition to any other sanctions or remedies that may be available under law, a covered entity that is a group health plan, health insurance issuer, or issuer of a medicare supplemental policy and that violates the HIPAA privacy regulation (as revised under subsection (a) or otherwise) with respect to the use or disclosure of genetic information shall be subject to the penalties described in [the HIPAA Statute] in the same manner and to the same extent that such penalties apply to violations of this part. (Emphasis was added).

GINA aims to protect the privacy of all Americans’ genetic information and to establish a national and uniform basic standard necessary to fully protect the public from discrimination based on genetic information.  Until yesterday, genetic information has been protected specifically only by a handful of states.  In New Jersey, the New Jersey Genetic Privacy Act (N.J.S.A. §§10:5-43 et seq.) already provides that no person may disclose or be compelled to disclose the identity of an individual upon whom a genetic test has been performed, or individually identifiable genetic information, except pursuant to a few very limited exceptions. See N.J.S.A. §10:5-47.  However, any entity that or individual who uses or handles DNA in New Jersey should reevaluate its disclosure and consent procedures in light of GINA’s new standards.

Full post as published by HIPAA Health Law & Technology on April 25, 2008 (boomark / email).