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Doctor’s explanation of disability risks in unborn children can be misleading, author says

Children sitting inside school bus

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In an article I wrote back in March, I spoke about the pressure that doctors often put on the parents of disabled unborn babies to abort.

One study cited in that article found that:

… [d]espite the shock and grief they may experience upon hearing the news of a fetal anomaly, the pregnant woman and her partner are usually urged to make the decision to terminate quickly. Behind the urgency is the physician’s desire to avoid complications of ‘late’ terminations of pregnancy. Because of the delays involved in amniocentesis, abortions may occur in the second and even third trimester pregnancy. In health care settings, the issue of such late abortions has raised ethical and legal questions. In one early study, most of the terminations occurred within 72 hours of the woman receiving the news of the abnormality. This hardly allows time for the couple to become informed about parenting children born with that anomaly and thus considering carrying through with the pregnancy.

I was reading a book called All God’s Mistakes: Genetic Counseling in a Pediatric Hospital by Charles L Bosk.

Bosk interviewed counselors who met with pregnant women and their partners and talked to them about the risks of having a disabled child. The author also attended some of these counseling sessions. Sometimes the counselors would meet with the parents after amniocentesis had determined that the baby had a health problem. Other times they met after the test was inconclusive.

Then there were cases where the parents carried a gene for a genetic illness, but there was no test available to detect whether the baby was affected. In these cases, the counselors were supposed to give the parents information about the risks to the child and let them decide whether or not to abort. There was the possibility that if they chose to abort, they would be killing a healthy child.

The author notes how counselors explained the risks to couples:

… the very fact that risks can be expressed in numeric form allows counselors, if they choose, to merely pass information on to clients in an objective fashion; for example, “The normal population risk is 3%. Your risk is 6%.”… Such risk statements without elaboration are rare… For example, consider the difference between the following statements, each of which is correct: “Your risk is 3% greater than that of the general population” and “Your risk is double that of the general population.” Risk statements of the latter form are more common than bare, unelaborated numbers, despite the counselors’ commitment to not intruding on the privacy of patient decision-making.

This quote shows that the way statistics are stated has a huge impact on the message conveyed. Saying. “The risk is two times greater” vs. “The risk is 3% more” puts two completely different spins on the data. It could have a profound impact on couples’ perception of risk and, therefore, their decision whether or not to abort. It is disturbing to read that the counselors used the “2x greater” phrasing much of the time. One wonders how many couples choose to abort thinking that the risk of having a disabled child is much greater than it actually is.

Why do the counselors phrase risk this way? One possibility is that they are biased towards abortion because of “wrongful life” suits sometimes aimed at medical facilities and doctors after the births of disabled children.

It is unknown as to whether this way of stating risk is common among medical personnel, but parents should be aware that what doctors say can be misleading, and, if faced with a baby who has a possible genetic disability, it is important to do more research.

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