Scientists conducting DNA tests on disabled children may inadvertently make startling discoveries of incest, sparking a range of ethical dilemmas that require guidance, doctors say.
In a letter to the medical journal Lancet published on Friday, Arthur Beaudet of Baylor College of Medicine in Houston and colleagues point out several thorny issues DNA experts may confront when performing genetic tests on children with developmental or intellectual problems.
Scientists sometimes analyze the DNA of disabled children looking for clues to understand their underlying disorders. That may lead to chromosomal information that identifies the children as having been conceived by two close relatives.
The authors say scientists doing such tests could legally be required to report that information to authorities in cases where the mother conceived as a minor.
"Many cases of previously undocumented ... incest are likely to be identified in patients with various disabilities," Beaudet and three other colleagues wrote.
"Clinicians who uncover a likely incestuous relationship could be legally required to report it to child protection services and potentially the police," they said, explaining the pregnancy might have been the product of abuse.
But they said in cases where the mother is an adult the doctor's responsibility to report the incest might be less clear.
DNA tests are often used to prove abuse in incest cases. In Europe's most infamous incest crime, Austrian Josef Fritzl was found guilty in 2009 of locking his daughter in a dungeon for 24 years and fathering seven children with her. He is serving a life sentence.
Beaudet and colleagues did not cite any studies on the prevalence of the problem. But they suggested institutions establish committees to discuss the legal and ethical issues surrounding DNA testing. They proposed that guidelines be developed by American and European genetics organizations.
"I am absolutely certain this will be a big issue going forward," said Ross Upshur, director of the Centre for Bioethics at the University of Toronto. He was not connected to the letter. "Science is moving so fast it is often discovering information that we won't know is sensitive until the future," he said.
Upshur said science has often outpaced ethical considerations on issues such as cloning, stem cell research and genetic sequencing. He agreed recommendations were needed to advise doctors on how to handle potentially sensitive information.
"You can't put Pandora back in the box," he said. "But you also can't stop scientists from exploring legitimate avenues of genetic discovery."
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