Sequenced at birth: what happens when parents know their child's genes?

The National Institute of Health is funding a study to see what happens when babies have their entire genome sequenced and the parents are told. The aim of the study is to see if healthcare improves, or if it bring unintended consequences.

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LOS ANGELES, CA (Catholic Online) - The National Institute of Health announced the project on Wednesday saying they would screen several thousand babies at birth for genetic conditions to see what happens.

Already private genome sequencing is going public with individuals now able to purchase kits that allow them to have their genes sequenced. Such kits cost about $100, and can tell a person about their ancestry dating back to the earliest humans.

More expensive kits can cost thousands and can also tell a person if they have genetic markers for particular conditions. Such markers might include genes for heart disease, cancers, and obesity.

The NIH study will determine what happens when we have this data for babies. Will the babies grow up with better care, knowing they are at risk for genetic conditions? Or will there be too much information for parents to handle?

The agency is setting aside $25 million via the National Institute of Child Health and Human Development to screen about 4 million children. Not all of those children will get the full test, thus forming a control group.

Tests will be conducted at four facilities, Brigham and Women's Hospital and Boston Children's Hospital; Children's Mercy Hospital in Kansas City; the University of California, San Francisco and the University of North Carolina at Chapel Hill.

The experiment also raises new questions. For example, who should have access to the information and for what purpose? Will doctors tell parents what they learn and should they?

Broader questions can be raised. For example, what if insurance companies made determinations based on DNA tests?

What happens when parents can sequence their child's entire genome before birth? Will elective abortions be used in cases where a baby might have an undesirable trait?

It should be noted that not all genetic conditions actually manifest themselves in patients, even if the risk factors are present. In these cases, parents could get bad news about their child that is unwarranted.

Perhaps the most troubling fact about the study is that it is being used as a platform for debating ethical questions when those questions should be answered before the study is conducted, not following.

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