What Would You Do?

If you could know in advance that your infant was going to be afflicted with a serious disease such as diabetes, breast cancer, alzheimer’s or ALS later in life, would you want to know? In the past two days, I’ve seen and heard two different programs on genetics and what doctors can tell us about our health. Right now, infants are screened at birth for harmful or even potentially fatal disorders that can be cured or improved with early diagnosis (remember that PKU test?) Now most states screen for over 30 disorders, all with a single drop of blood. But would you want an entire genetic make-up on your infant?

One program that I watched on television interviewed adults with diseases, or who had the potential to develop life-threatening diseases. All of the adults in the program were given a choice about whether or not they wanted to be told about their specific genetic test. All opted to be told what their genetic screening told them about their future. Some received good news, some not so good.

The second program was on NPR. A woman with a premature infant was being interviewed. She and her husband had taken their baby to the hospital because of on-going breathing problems, and the doctors had done genetic testing on the baby to see if the problems might be related to one or more specific genetic disorders. In the process, the couple was given the option of finding out a multitude of future problems that the child might develop as she grew older. In other words, the couple could choose to get their child’s entire genetic profile.

What would you do if you had the dubious opportunity to have this information in advance?

The couple received good news about the breathing issues. Their baby did not have a genetic problem and, with further hospitalization, their infant was able to overcome the breathing problems. But did the parents choose to know more? They opted not to know. They asked the doctors to look for only information on genetic breathing problems, not on the baby’s entire genetic profile.

Why? The mom said she only had “enough grace for one day.” Essentially, she and her husband were going to take the future health problems, if there were any, as they came.

With more advancements in genetics, these decisions will become more commonplace. Adults may or may not want to know if they will be facing alzheimer’s in their future. But what about children? If you knew that your child could be potentially facing a serious disease as an adult, would you want to know? Would every cough, every fever, every sickness become a reminder of that future? And when would you tell the child about it?

So many questions. But we’re at that moment in scientific/medical advances now.

What would you do?