If you could know your unborn child's entire genetic makeup, would you want to? Researchers believe that tests that detail your unborn fetus's entire genome will soon be available for under $1,000, putting it within the price point that many people would be willing to pay. One team of researchers worry about the potential ramifications that this knowledge could have, for parents, for children, for families and for society.
Genome sequencing differs from current genetic tests, both ethically and practically, Greer Donley, a law student at the University of Michigan, and her team of researchers say. Current genetic tests identify the risks of certain genetic anomalies for fetuses at high risk of them. Genome sequencing, on the other hand, would be sought by a much larger group of future parents. Most importantly, genome sequencing would drastically increase the volume and scope of prenatal data, including a wide range of genetic traits and disease susceptibility.
Donley and her fellow investigators cited three specific areas of concern. The quality and quantity of information in existence, and the changing definition of "normal", may lead to an increase in the number of pregnancy terminations.
They also worry that, after the child is born, genome sequencing could have implications on raising children. For example, if parents are already aware from the time of their child's birth of little Billy's predicted low IQ score, it may cause them not to push him to do well in school, even if the prediction is incorrect.
Donley and her team also point out that a parent's right to know in order to better inform their reproductive choices may conflict with children's rights to not know.
But researchers also point out that genome sequencing would be futile for a while. For 90 percent of genes their function remains unclear, so sequencing would be unclear and of relatively little use. Researchers believe that, in the present tense, specialized genetic testing, like the kind currently in use, would hold more utility for future parents than genome testing.
The National Institute of Health fellows suggest that doctors elaborate a plan about just what kind of information may be given to parents. They also say that the child's right to not know should not be breached, except in special circumstances. Professional societies, like the American Medical Association, should coach the public on the difference between genome tests and current genetic testing. And, of course, they say that more data is needed to coach both professional organizations and the public.
The researchers' concerns were published in a recent issue of The Hastings Center.