When politics, medicine, and the rights of patients to complete and accurate information collide, which should prevail? Should patients be denied important medical information because some do not approve of the choices they might make based on that knowledge?

These are questions at the heart of a battle among legislators and political activists in Pennsylvania and throughout the country. Several states have adopted or are debating laws that would prevent parents from suing doctors who fail to warn them about fetal problems that could have permanent consequences.

Sharon and Steven lost their son to Tay-Sachs disease when he was less than three years old. There is no cure or treatment for the genetic disease, and it is usually fatal by the time a child is five. Although the disease can typically be detected when children are in the womb, the couple’s doctor didn’t test for it. The baby was diagnosed when he was six months old. After that, he lost control of his muscles, had constant seizures and died two years later.

Sharon and Steven sued their physician and received an undisclosed settlement. This is because New York, where the couple lives, has no prohibition against suing doctors for negligence in prenatal testing. Had they lived next door in New Jersey, which has adopted such a law, their ability to seek compensation would likely have been severely curtailed.

Some political activists claim that these laws reiterate the value that every life is worth protecting. Others, including some parents who have lost toddlers to genetic diseases, might agree with the sentiment, but question who actually benefits from shielding doctors from consequences when they fail to perform testing or fail to provide critically important information to patients.

The proposed laws may have other serious implications for parents. In several states, including New Jersey, these laws actually prevent parents from suing for intentional or grossly negligent acts on the part of a physician. These laws have been interpreted to mean that doctors could intentionally omit information about a pregnancy, including withholding information in such a way as would be considered grossly negligent in any other context.

While the public debate has often centered on the pro-life versus pro-choice battle, there is perhaps an important aspect of this issue that is being lost in the political arguments — the needs of patients to have accurate and complete information.

If, for example, parents know they are going to have a disabled child, they can attend counseling or put extra money in a savings account for the child. They can prepare, both emotionally and financially. However, without this information, parents are at a huge disadvantage, and what is already a painful situation is made much worse.

Should legislators and lobbyists have the right to prevent parents from accessing accurate information? Should doctors be empowered to make decisions about prenatal testing, diagnosis and patient notification that would, in any other heath care situation, be considered grossly negligent?

For parents of children suffering from genetic disorders or birth injuries, the fight is not about the choices parents might make with accurate information. It’s about preventing medical negligence and ensuring doctors provide patients with the information they need to make informed decisions.

Who benefits when that fails to happen? Certainly not parents of children with disabilities. It’s hard to see how keeping parents in ignorance and preventing necessary preparations is of any benefit to the children. It may be that when such laws are adopted, the only real winners are the medical organizations and their high-paid lobbyists who have spent millions and millions of dollars in an ongoing attempt to limit the rights of victims of medical malpractice to seek fair and just compensation.

Source: NPR, “Should Parents Be Able To Sue For ‘Wrongful Birth’?” Kathy Lohr, May 15, 2012