Genetic testing creates ethical dilemmas

SALT LAKE CITY — How bad would life have to be to wish — like George Bailey in "It's a Wonderful Life" — that you had never been born? And is any human so wise or all-knowing to make that decision for someone else?

Those are the kinds of questions Dr. Ted Liou, a cystic fibrosis researcher at the University of Utah, pondered while preparing an editorial he had published Wednesday in the Journal of the American Medical Association.

Liou works with people like Matt Meese, a 30-something financial planner with the disease, and Mike and Alta Hales, who have a child with CF, putting a larger family in doubt for them.

Because of genetic testing, they all know how likely they are to pass the disease, which causes chronic respiratory and digestive problems, along to their children. Yet all believe that a soul — one human life — is a priceless gift from God. The question they, and millions of other future parents, will have to ponder is this: Where you do draw the line on the risk of perpetuating a potentially devastating disease versus the rewards of giving life to another?

Liou doesn't pretend to know. His editorial comments on an Italian study that compared a cohort of parents who knew they could pass the disease along and decided not to have children, with another group that carried the disease but didn't screen for CF before getting pregnant. The overwhelming tendency of informed parents was to forgo pregnancy.

"If you have no technology (for screening), then there are no choices to make. But when you have all this information and are given the power to act on it, then it brings into focus what you have to decide. It should make people stop and think about what do they really believe — not about trivial things but about the worth of human life, God, ethics, morals, parenting, the duty of parents toward sick children," he said.

As genetic testing for any number of diseases becomes more widespread, those issues will become pertinent for millions of potential parents.

As recently as the 1960s, children born with CF died by about age 6, he said, yet "even assuming today's therapies will be all that's available in the future, the average lifespan of a baby born in 2009 is 37, and with medical advances, they'll probably average better than that."

Meese said he was diagnosed in 1979, at 18 months. He was the youngest of five children and the only one with CF. His parents decided he should live the same kind of life as his siblings to the extent that he could. He went to summer camp for years with other CF patients and grew close to a group of nine others who had similar symptoms but struggled with their illness to varying degrees.

"There were 10 of us, and only three of us are left," he said, noting some died during childhood while others lived longer. One of his closest friends married and died before his first wedding anniversary.

"I've been to lots of funerals and planted lots of memorial trees. … A lot of them died before I went on my (LDS Church) mission," a two-year assignment during which he was able to take care of his own treatments. He came home for a short hospital stay at one point but returned immediately to his assignment and was able to finish.

"I've had a great life. Even my friends who died at 18 said they had a really full life. I would never second-guess this (his chance at life) … and I would do it again," Meese said, adding that he hopes to live another 20 to 30 years because his disease is not as severe as that of many of his friends.

Mike and Alta Hales had no clue that either of them was an CF carrier. The young couple planned to have four children, but they have decided their current family of three will suffice after their youngest was diagnosed with CF. Their son Elliot still weighed less than 6 pounds at 2 months of age, and doctors at Primary Children's Medical Center tested him for CF early on when they were told of his inability to gain weight and his constant diaper changes.

"It was a complete bombshell," Mike Hales said. With treatment, Elliot has gained weight and is living a happy life, despite the treatments he must undergo two times daily and the medications he takes. He's now 2 years old, and his parents keep him away from many social activities they would otherwise attend because catching a simple cold could spell medical disaster for him.

Travel is difficult and must be meticulously planned. The daily family schedule is formulated around Elliot's treatments and medications. He does not spend time in the nursery at church and won't go to preschool or kindergarten, his mother said, to help him avoid becoming infected with germs that could kill him.

The medication he currently takes costs $1,200 per month, though the family has financial help with most of that cost. But as he grows, Elliot likely will need changes in his medication and treatment regimen, all of which leaves his parents wondering what that will mean for the family as a whole.

Yet both agree they would never trade the opportunity to raise their son, whether they knew in advance about his disease or not.

"Despite the challenges, there are great rewards and blessings that come with this," Mike Hales said. "We've seen support from the community and our families that we never would have seen had he not had CF. That's been amazing."

Both believe that advances in medication and treatment could one day mean a cure for their son.

"We're hopeful," Alta Hales said. "If they were to tell us there would be a cure next year, or there was a pill you could take every day to cure it, we would probably have another child. But for now, three is perfect."