SALT LAKE CITY — When Amber Merkley and her husband received a diagnosis of Down syndrome for their unborn son, she concedes "we were devastated."
Immediately, Merkley thought of how the news could affect her other children.
"Would they be proud of him? Would he be a burden to them, us, or (everyone) else?" she remembers thinking. "Would he be accepted?"
As the West Valley City woman learned more from her medical providers about what raising a child with Down syndrome would be like, she said, "we were asked ... about our intentions ... about continuing or terminating our pregnancy."
But Merkley said another kind of diagnosis — one given by parents who were raising their own Down syndrome children — far outweighed all other considerations.
"We were told we'd find more joy .... than we imagined," she said. "We found that diagnosis much more powerful and much more real than the clinical one we received."
Three-year-old Finn Merkley accompanied his mom and dad Monday at the Capitol, where they went to offer their support of bill, unveiled on the first day of the state legislative session, that would make it illegal for a medical provider to perform an abortion if they have knowledge that the woman seeking the procedure is doing so because their child would be born with Down syndrome.
Rep. Karianne Lisonbee, R-Clearfield, the sponsor for HB205, said if passed, the measure would make performing an abortion in that circumstance a class A misdemeanor.
Lisonbee said she was alarmed by "the elimination of an entire group of people (simply for) having a single immutable genetic trait."
"In recent years there has been a shocking increase in abortions performed for no other reason than because a prenatal test identified the potential for a trait a parent didn’t like," she said. "For a society that claims to uphold tolerance and inclusiveness, it appears we still have a long way to go."
The termination of pregnancies involving a Down syndrome diagnosis is especially prevalent in countries such as Iceland, Denmark and the United Kingdom, according to Lisonbee.
University of South Carolina research published in 2012 indicated the rate of termination of such pregnancies in the United States likely falls between 60 to 93 percent, according to the aggregated prior findings of numerous "population-based" and "hospital-based" studies.
HB205's language would require that human tissue removed in the course of an abortion be subjected to a pathology report that would include information on whether "the aborted fetus had or may have had Down syndrome," as obtained by "a prenatal screening or other diagnostic test." It wasn't clear Monday how such information in a pathology report would affect enforcement of the law, if it passes.
The bill also stipulates that a woman receiving the abortion "may not be prosecuted for violating or conspiring to violate" the new requirement.
Karrie Galloway, president and CEO of Planned Parenthood Association of Utah, criticized the bill, saying it "is about restricting access to abortion, not protecting those with Down syndrome."
"The decision to terminate a pregnancy is a deeply personal and sometimes complex decision that must be left to a woman, in consultation with her family, her faith and her health care provider," Galloway said. "Many parents find that having a child with Down syndrome is the right decision for them, but this does not mean that their experience should lead to a law that forces other families into the same situation.
"Regardless of how one personally feels about abortion, it’s important that it remain a safe and legal medical procedure for a woman to consider if and when she needs it,” she said.
Sen. Jim Dabakis, D-Salt Lake City, said he believes the bill amounts to the state "trying to take a very complex situation and put one master solution into the lives of everybody."
"I think what we're talking about is who should make that choice," Dabakis told the Deseret News. "I have a great deal of difficulty leaving it in the hands of the legislative body."
But Rose Carter, of Layton, whose 2-year-old son Dominik has Down syndrome, views it differently. She attended the announcement of the bill "to represent (Dominik), to let people know it shouldn't be a death sentence" to be diagnosed with the condition.
"They bring extra love, they bring extra happiness, they bring extra everything to your life. I never would have known that if I had chosen an abortion," Carter said in an interview with the Deseret News.
Like Lisonbee, Merkley views the bill as a way of protecting the unborn with Down syndrome from persecution on the basis of their disability.
"I wish there was no need, but until we are willing to accept Finn's difference just as we (have) accepted and embraced so many other differences, we need laws to protect individuals with Down syndrome from discrimination," Merkley said.
Sen. Curtis Bramble, R-Provo, who is also sponsoring the bill, presented his case for it Monday by saying "there is nothing more important than protecting those who are most vulnerable among us."
"By announcing by this bill … we will walk the walk, we will do all we can to protect the most precious, the most vulnerable, the most innocent among us," he said.
Marina Lowe, legislative counsel for the American Civil Liberties Union of Utah, said "it's notable that there's a constitutional note attached to the end of this bill ... essentially letting legislators know the legislation they're considering is likely unconstitutional."
Lowe was referring to a note issued on behalf of the legislative general counsel saying that "based on applicable state and federal constitutional language and current interpretations of that language in state and federal court case law ... this legislation has a high probability of being declared unconstitutional by a court."
"It's likely to be struck down," Lowe said, if it passes. "It's likely there would be a court challenge and based on current law, it likely would not withstand that challenge. Potentially this could be challenged immediately."
A similar law in Indiana was successfully challenged in court recently, according to the note from legislative counsel. Lisonbee said, however, that other laws closely resembling her bill are in place in Ohio and North Dakota.
Asked whether she has concerns about how to effectively enforce the law, Lisonbee told the Deseret News, "I think there are ways around every law."
"People break laws all the time," she said. "That's why we have a criminal justice system."
Despite any potential for any law to be disobeyed, Lisonbee said, she believes "our laws should reflect the best policy for protecting all in their rights to life, liberty, and the pursuit of happiness."34 comments on this story
The bill would also require a physician consult with the expectant mother upon any detection that the unborn child could have Down syndrome, and give the woman a referral to a physician or other medical specialist "who is knowledgeable about providing medical care to a child with" the condition. That consultation would be required to happen in person or over the phone.
The consulting physician would also be required to refer the woman to "state or national Down syndrome parents' groups," the bill states.