According to a new report in a prestigious bioethics journal, scientists may soon be able to map out the entire genome of an unborn child, giving parents much more information about their baby to enable them to make a “reproductive choice” about whether or not to abort it.
Inside Science News Service is reporting that the article, written by scientists associated with the National Institutes of Health (NIH) and published in The Hastings Center journal describes the budding technology that will enable scientists to take DNA from an unborn child and conduct a prenatal whole genome sequencing test. This test will reveal virtually every gene and chromosone and provide an abundance of information about the child a woman is carrying, including what diseases he or she might contract in their adult years.
“If parents don’t like the results, options can include abortion or maybe genetic manipulation,” Inside Science reports.
All of it will be had through nothing more than a simple blood test that costs thousands of dollars today but is expected to drop precipitously in the near future to less than $1,000 with a highly lucrative cottage industry expected to grow up around it.
The ethical ramifications of such a thorough test cannot be understated, however, because there is no limit to what the future may unfurl in the field of genetics. For instance, discoveries about which genes are linked to intelligence or athletic ability could tempt parents to abort a child that doesn’t fulfill their dreams of raising a future OIympic gymnast or renowned neurosurgeon. What if a child’s genes reveal a propensity toward heart disease or cancer?
At present, prenatal testing is mostly diagnostic and restricted to cases where there is reason to suspect that a child might inherit a disease, such as in the case of Tay-Sachs disease which is prevalent in the genes of Ashkenazi Jews. Science can also test a child to see if it has Down syndrome or cystic fibrosis.
But this type of genetic sequencing is much more thorough and is certain to raise many thorny ethical questions in the future.
“Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways,” the Hastings report said. “Most notably, whole genome sequencing would radically increase the volume and scope of the available prenatal genetic data.”
For this reason, renowned bioethicist Arthur Caplan of the New York University Medical Center thinks it will be “the most controversial topic in the next 20 years.”
Just having so much data at their disposal will create many new anxieties for parents, say authors Greer Donley, a law student at the University of Michigan who interned at NIH along with Sara Chandros Hull and Benjamin E. Berkman, on the faculty of NIH. For one thing, the sequencing would likely generate anxiety and could even change a parent’s idea of what “normal” means.
There is also the question of privacy.
“What happens when the privacy of the parents clashes with the privacy of the person yet to be born? What if the genome says the person will suffer a terrible disease later in life? What if they are carriers of genetic disease? Don’t the offspring have a right not to know if they chose?” Inside Science writes.
For example, genetic tests exist for hereditary diseases such as Huntington’s disease but many potential carriers of these genes choose not to be told they have them.
There is also the problem of people being misled by the tests. For example, just because someone is genetically inclined toward heart disease doesn’t necessarily mean they’re going to develop it.
The authors are strongly recommending that the medical community decide now which information should be offered to parents, and which not. The report also said that a child’s’ right to know his or her genetic information should be respected unless the child would clearly benefit from that knowledge.
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