Parents always want the best for their kids, but advancements in medical science have brought some ethical dilemmas to the forefront of pop culture.
DNA testing is everywhere. Companies like 23 and Me and Ancestry.com make affordable DNA testing products that promise to show you where you’re from, and reveal what your genes may have in store for you.
But experts say those tests can reveal things about you, or your family, that you may not want to know.
Angelina Jolie famously got a pre-emptive double mastectomy after finding out she was at increased risk for breast cancer.
A recent 8 On Your Side exclusive story uncovered how one woman found out her dad wasn’t her biological father.
The ethical conundrum deepens when the testing is for a child.
“Sometimes parents may be carriers for a particular disease, but not have the disease, and the child ends up getting it,” said Katherine Drabiak, Assistant Professor of Bioethics and Genomics at USF. “What you see in the parents vs. what you see in the child may be different.”
Drabiak said the medical ethics community believes if there are no symptoms present, and no medical reason for the testing, then it should be avoided.
“We think children should have some right to be free from knowing information that might otherwise cause them anxiety or distress,” said Drabiak. “And it can go both ways. It’s knowing something that they might have a diagnosis that’s devastating. Or it might be the opposite, where there’s a number of family members who have a disease, and the child finds out they’re not at risk for it.”
Ornela Myteberi isn’t considering DNA testing for her 8-month-old daughter Edea, but she did get some genetic testing done when she was pregnant.
“It’s better for me to know what measure I can take,” said Myteberi. “Because there are, for example, diseases that you can prevent. There are others that you cannot do anything.”
While that may be true, Drabiak said the ethical decision behind doing that testing–without a medical reason–should be up to each person, even if they’re only a child.
“Most people in this clinical ethics community would say parents don’t have a right to that information, because it’s not the parent’s information,” said Drabiak. “And there’s nothing you can do about it at this point. In a sense, children have a right to keep that information private, and not know it. It’s like once you open the genie out of the box, you can’t close the lid again.”
The American Society of Human Genetics recently put out a set of recommendations around the Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.
Myteberi said she has no reason to test Edea and doesn’t believe she’s at risk for genetic diseases, but she still said she would want to know if she had the option.
“Perhaps it’s not curable today,” Myteberi said, “but it can be some years after. So, better to know I think.”