Scientists predict that parents-to-be will soon be able to find out the genetic details of their growing fetus including how their child will act during their teenage and adult years.
In a test that scientists call prenatal whole genome sequencing parents can see every gene and chromosome of their expected bundle through a simple blood test. Experts believe that the test costing less than $1,000 will eventually grow in popularity within the medical industry.
When a woman becomes pregnant, DNA from the fetus will enter the mother’s bloodstream. In a blood sample taken from her arm, fetal information can be separated to determine the genetic structure sequenced. This process is already being used in available tests examining and diagnosing inherited diseases. For example, Ashkenazi Jews carry a rare but troublesome childhood disease called Tay-Sachs. If the disease is found, Jewish couples can decide whether or not they wish to continue or terminate the pregnancy. Current prenatal tests are also used to show if a child will have Down syndrome or cystic fibrosis.
Sequencing tests today cost thousands of dollars. Experts believe that the price will drop but the controversy will rise.
“[This will be] the most controversial topic in the next 20 years,” said Bioethicist Arthur Caplan of New York University Medical Center. “And anyone who thinks that information that can lead to abortion isn’t going to be controversial has been asleep since Roe v. Wade.”
A report from the Hastings Center warns of the major differences between current prenatal genome sequencing and the future sequencing tests.
“Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways,” the Hastings Center report said. “Most notably, whole genome sequencing would radically increase the volume and scope of the available prenatal genetic data.”
Study authors report several problems with the PWGS. They believe that the data retrieved is too ambiguous to determine what a human genome can actually do. The report said that in many cases it takes more than one human genome to reveal a particular disease or characteristic.
Another problem the report found is the parental anxiety the can arise from test results. The report finds that most parents view their child as normal but the extra information can lead them to question what is normal and cause unnecessary anxiety.
Hastings researchers also believe that sequencing can affect parenting. If genes associated with high intelligence or high athletic ability is not present, would it change the parents’ expectations and parenting methods?
The report lastly raises the issue of the offspring’s privacy since parents are making decisions for a person that is yet to be born. Researchers believe that the parents’ actions based on test results can take away the offspring’s right to know and choose for themselves.
Caplan said that although the genome information provided can be helpful, it does not mean that it will come to pass.
“All genetic stuff is probalistic. It is beyond argument that we have a difficult time dealing with risk,” Caplain explained.
Pamela Knight, a genetic counselor in Chatham, N.J. said that it is very difficult to make predictions from genetic information.
“We are nowhere near predicting those things,” Knight said. “It’s very, very, hard to know how to counsel people.”
The Hasting Center report said that the medical community should decide what genetic information is essential for parents to know and not know. Researchers said that a child’s right to their genetic information should not be breached unless the child can benefit from it.