Genetic Information Nondiscrimination Act
Background: First introduced in the mid 90's, the Genetic Information Nondiscrimination Act (GINA) was designed to prevent employers and health insurance companies from discriminating against individuals and their families based on the results of genetic tests. The measure passed the Senate in 2005.
In a February 12, 2007 letter to the House Committee on Education and Labor, Cardinal Justin Rigali, Chairman of the Bishops' Committee on Pro-Life Activities, drew attention to an "apparently unintentional loophole." As introduced, the bill seems not to address discrimination against families "based on the preimplantation or prenatal genetic testing of their child, or genetic testing performed on an adoptive child before an adoption is completed." The Cardinal cited the example of an insurance company misusing knowledge of a child's genetic defect "to raise a woman's premiums, cancel her insurance, or even pressure her to have an abortion or cancel adoption plans for a child with special needs, because the company does not wish to cover the additional needs of a child who will develop an illness or disability."
The Cardinal urged that the resolution of this practical problem not become "a victim of the politics of abortion," noting that groups supporting "abortion rights," such as the ACLU, have cited discrimination based on prenatal testing to illustrate the need for this legislation. The Cardinal also observed that in 2005, when this legislation passed the Senate, sponsors disclaimed any intention of excluding these situations. The understanding also was expressed that the intent would be clarified later, but this did not happen because the House did not act on the bill. Congressional Record (2/16/05), S1480. For the full text of the Cardinal's letter, see: www.usccb.org/comm/archives/2007/07-032.shtml.
House: On January 16, 2007, Rep. Louise Slaughter (D-NY) introduced the GINA (H.R. 493). The measure had 224 cosponsors and was referred to three committees: Education and Labor; Energy and Commerce, the Subcommittee on Health; and Ways and Means, the Subcommittee on Health.
Committee: On February 14, 2007, the Committee on Education and Labor marked up its sections of the bill and reported the bill in amended form. Rep. Tim Walberg (R-MI) offered an amendment to amend the definition of "family member" to include the child to be born or to be placed for adoption. That amendment was rejected, 20 -yes, 27-no. Two Democrats voted "yes," Reps. Dale Kildee (D-MI) and Jason Altmire (D-PA); two Republicans voted "no," Reps. Michael Castle (R-DE) and Judy Biggert (R-IL); two Republicans were absent, Reps. Bob Inglis (R-SC) and Todd Platts (R-PA). All other Members voted along party lines, the Democrats "no," the Republicans "yes."
Floor: H.R. 493 was considered on the House floor under Suspension of the Rules (no amendments, two-thirds vote for passage). The House included in its bill needed corrections proposed by Rep. Bart Stupak (D-MI), applying GINA's protections to the "Genetic Information of a Fetus or Embryo" and referencing existing federal law's definition of a dependent, which includes children placed for adoption. During floor debate, Rep. Bart Stupak (D-MI) pointed out the concerns about genetic discrimination from testing embryos and fetuses and about genetic discrimination against children in the process of adoption. He stated: "Together with Chairman Dingell, Ms. DeGette and Mr. Smith, we were able to close this loophole. . . . I am proud to have worked with so many Members to correct the concerns I had on this bill." Congressional Record (4/25/07), H4099.
On April 25, 2007, the House passed H.R. 493, H 420-yes, 3-no (Roll Call 261).
Senate: On January 22, 2007, Sen. Olympia Snowe (R-ME) introduced the Senate companion bill (S. 358). The measure had 45 cosponsors and was referred to the Committee on Health, Education, Labor, and Pensions.
Committee: On January 31, 2007, the Committee on Health, Education, Labor, and Pensions reported out a substitute version of S. 358. On April 10, 2007, a committee report was filed (No. 110-48). The loophole in the bill was not corrected.
Floor: On March 29, 2007, S. 358 was placed on the Senate calendar. On April 30, 2007, the House-passed H.R. 493 was read the second time and also was placed on the Senate calendar. At year's end, it was reported that Sen. Tom Coburn (R-OK) had placed a "hold" on GINA, blocking further Senate action. "One-Man Gridlock: Meet Tom Coburn, Senate's 'Dr. No'," Wall Street Journal, 12/21/07, A1.
On April 23, 2008, Sens. Olympia Snowe (R-ME), Ted Kennedy (D-MA), and Michael Enzi (R-WY) introduced Senate Amendment 4573 as a substitute text for the House-passed H.R. 493. This substitute text included the House language making the needed corrections that apply GINA's protections to the "Genetic Information of a Fetus or Embryo" and that reference existing federal law's definition of a dependent, which included children placed for adoption. During floor debate the following day, Sen. Sam Brownback (R-KS) pointed out in a special way "a provision in the bill that was added on the House side by Representative Bart Stupak from Michigan, that would prevent the use of genetic information from unborn children and children in the process of being adopted" (Congressional Record, 4/24/08, S3370).
On April 24, 2008, the Senate passed its version of GINA (H.R. 493), 95-yes, 0-no (Roll Call 113).
In a statement praising the Senate's action, Deirdre McQuade, Assistant Director for Policy and Communications at the Bishops' Secretariat of Pro-Life Activities, expressed special gratitude to Rep. Stupak "for ensuring that this bill's protection against discrimination will cover the families of unborn children with adverse prenatal diagnoses, as well as children being adopted." For the full statement, see: www.usccb.org/comm/archives/2008/08-057.shtml.
House: On May 1, 2008, the House, voting 414-yes, 1-no, approved the Senate-passed H.R. 493 (Roll Call 234). Thereafter, the House and Senate approved technical corrections to the bill (H. Con. Res. 340).
Law: On May 21, 2008, the President signed H.R. 493 into law (Public Law 110-233).