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Fetal Sequencing Questions

Fetal whole genome sequencing is now possible, and before too long it is possible that prospective parents may be asked just how much they want to know about their offspring early on in pregnancy. And when it does arrive in the clinic, prenatal WGS will present some difficult or prickly ethical and policy-related questions to doctors, parents, and policymakers.

It is one thing to screen for possibly serious genetic disorders, but quite a different matter to consider testing for risk for adult-onset diseases or even the likelihood of traits like baldness, writes Lisa Lehman and her co-authors in the New England Journal of Medicine.

There are big, obvious questions, as well as more complex ones, that prenatal sequencing poses, they say. "Should women be offered prenatal whole-genome sequencing? Should parents have access to all their fetus's genetic information?" the authors ask.

They also ask how society will deal with the question of whether or not prenatal WGS will affect the rate of abortion. There also will be concerns about what the psychological burden of having genomic information will be on parents and children, and whether some children may be stigmatized or discriminated against based on their genomes.

Additionally, there also is the risk for unexpected findings such as misattributed paternity, as well as findings of unknown clinical significance.

In spite of these possible problems, Lehman and her co-authors argue that parents who want to obtain their fetus's genetic information should be able to get it — after they receive genetic counseling.

"The ethical foundation for providing this option is a basic right of reproductive choice and parental autonomy; people may choose when, with whom, and how to reproduce, and they have the right to data that may inform these decisions," they write.

Likewise, concerns about potential increases in abortion rates also should not justify withholding of information from parents about their fetus' risk of genetic diseases, Lehman and her co-authors state. "We suggest that fetal whole-genome sequencing be presented as an additional choice," they write. "Many parents will probably opt not to obtain this information. Those who seek it can make a compelling argument for their right to receive information that involves the health and well-being of their child or that may guide a decision about pregnancy termination or future reproduction."

Although there are ethical problems that will greet the arrival of prenatal sequencing, the response should be educational resources that better enable people to comprehend complexities and limitations of genetic information, such as genetic counseling, the authors argue. "Whole-genome sequencing has substantial potential for medical and personal utility. We believe that obtaining a fetus' full genetic profile should be the parent's choice," Lehman and her co-authors add.