What if there was a chance to avoid the disease through lifestyle choices? Does that change your answer?
Peeking into a baby’s DNA to look for future health risks. It’s full of ethical challenges. But the technology is here and that decision is likely looming on the horizon for many of us.
Until now, this kind of in-depth genetic testing has mostly been done for curious adults or to help diagnose mysterious illnesses. But experts say it’s inevitable that DNA mapping could eventually be offered as an additional screening for newborns at the hospital. As it stands, the cost of such a thing is too expensive for most people but, as with most technological advances, the price is dropping quickly.
Parents could choose to learn about treatable or preventable conditions. So, in addition to pediatric diseases, parents also could learn whether a baby carries a particular breast-cancer-causing gene, information useful once the baby has grown up.
As Yahoo reports, last month the National Institutes of Health announced a $25 million, five-year pilot project in four cities — Boston, San Francisco, Chapel Hill, N.C., and Kansas City, Mo. — to start answering some of the ethical and legal questions before the technology is widely offered for babies.
Some of those questions: Should parents opting to test their child’s DNA be told only about childhood threats? Or would they also want to learn if their babies carried a key gene for something like breast cancer?
Nurse Holly Sloan was eager to enroll daughter Amelia. Although she was afraid to learn bad news she wanted to know if there was anything she could do as a parent to alter her daughter’s genetic course.
“If it was something that we could hopefully prevent through diet or exercise or some kind of lifestyle change, we could start with that as early as possible,” she tells the Associated Press. “I guess I’m just the type of person, I would rather know and address it.”
For those pioneering babies like Amelia, researchers are “trying to figure out what is legal, versus ethical, versus good medicine” when it comes to revealing the information to parents. But what about the child’s say? What if something is revealed to parents that a child would rather not have known as an adult? The ethical questions are endless.
U.S. babies are already screened for diseases right after they’re born. They have a heel pricked in the hospital so their blood can be tested for signs of at least 30 rare diseases. This newborn screening catches several thousand affected babies each year in time for early treatment to prevent death, brain damage or other disabilities. It’s considered one of the nation’s most successful public health programs.
The kind of genetic blueprint the National Institutes of Health is considering would search for hundreds of other conditions that arise throughout a person’s lifetime, some preventable, some not.
“If I truly believed that knowing one’s genome was going to be transformative to medicine over the next decade or more, then wouldn’t I want to start generating that information around the time of birth?” asked Dr. John Niederhuber, former director of the National Cancer Institute.
But would knowing certain medical information cause one to be denied health coverage for a pre-existing condition? What if the information learned actually saved the life of the person? Is that invaluable information worth taking the ethical risk of peeking into your child’s DNA? What if you find out your child will likely contract a rare, debilitating disease by 50? Many, many people would not want to live their life with that kind of deadline looming over their head. Learning their genetic blueprint could end up completely defining the life they lead and who they become – which may or may not be a good thing.
As for me, I think I’ll skip the genetic testing on my baby. I don’t want my life or my child’s life to be defined by a possible illness. The freedom to live a life filled with possibility is, to me, worth the risk of not knowing, If something does arise we’ll handle it as we go. While there could possibly be medical benefits the ethical cost is too enormous. Also, who knows how your child’s genetic information could be used against him in the future? Our genes are already used against us when applying for healthcare, right? In other words, science is moving faster than our ability to understand the ethical implications so I’ll pass. For now, anyway.
What about you? Where do you stand on the issue of genetic testing on healthy babies?
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