WASHINGTON – The chairman of the U.S. bishops’ Committee on Pro-Life Activities is urging the House to amend legislation forbidding discrimination on the basis of genetic information to include unborn children, unimplanted embryos and those in the process of being adopted as “family members” under the bill.
Cardinal Justin Rigali of Philadelphia said the Genetic Information Nondiscrimination Act, H.R. 493, contained “one very unfortunate and apparently unintentional loophole” by limiting the children identified as family members of an individual to those who are “born to or placed for adoption with the individual.”
But the legislation does not 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,” he said.
The House Education and Labor Committee approved the legislation on a voice vote Feb. 14, without the specific amendment supported by the bishops. An amendment offered by the committee’s chairman, Rep. George Miller, D-Calif., extended protection to children in the womb, but did not address the preimplantation or adoption gaps.
Richard Doerflinger, deputy director of the bishops’ Secretariat for Pro-Life Activities, said his office would “continue to work to improve the language” as it goes to two more House committees before reaching the House floor.
In a letter to members of the Education and Labor Committee before the vote, Cardinal Rigali said he hoped amending the legislation would not “become a victim of the politics of abortion.” He noted that the American Civil Liberties Union, which supports keeping abortion legal, testified about a case of genetic discrimination based on prenatal testing to show the need for federal legislation.
In addition, “When the bill was debated and approved by the Senate in 2005, sponsors disclaimed any intention of excluding such situations and said the bill’s scope would be clarified later,” he said. “However, because the House did not act on the bill at that time, this was never done.”
If the legislation is not amended, the cardinal said, “an insurance company may misuse 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.”
“This bill would not provide a remedy, because the company did not misuse genetic information about the woman or a ‘family member’ (as defined in the bill) – in fact, if the discrimination is successful in achieving its goal, the child will never become a ‘family member’ at all,” he added.
Cardinal Rigali said the “explosion of knowledge regarding genetics in recent years … could bring enormous benefits to humanity” but could also bring discrimination against individuals and families if the knowledge is misused.
“The most fundamental and destructive form of such discrimination would be to use such information to seek to prevent a family from accepting a child with special needs into their lives,” he added. “I urge you to amend H.R. 493 to make it clear that such invidious discrimination will not be permitted.”