What parents should know about genetic malpractice

In the past, preventing the birth of children with genetic diseases was limited to laws preventing marriages between close relatives. When children were born with severe genetic defects, they often lived a life of suffering and eventual death. As medicine developed, however, the concept of genetic screening during pregnancy arose and the use of family history and prenatal tests to assess the risk of pregnancies with genetic abnormalities developed.

Today, with proper genetic screening, it is possible to detect some diseases early in the pregnancy and advise parents of these potential problems. However, if doctors and other medical professionals fail to properly screen for genetic diseases and a child is born with a permanent debilitating genetic condition do the parents or the child have legal recourse? The answer is: it depends.

Legal remedies for parent and child

New Jersey is one of only a few states that recognize causes of action for wrongful birth and wrongful life:

• Wrongful birth: Parents may have a claim for wrongful birth when the misdiagnosis of a detectable genetic defect results in the birth of a child who requires extensive and ongoing medical treatment, and the mother would have terminated the pregnancy had she been made aware in a timely manner, thereby preventing the permanent pain, suffering and disability the child must suffer.
• Wrongful life: A child born with a severe and debilitating genetic defect that could have been detected with appropriate screening may have a monetary claim for the extraordinary medical expenses and costs required to treat and make reasonable accommodations for the child’s well-being.

Both parents and child must demonstrate how the medical professionals failed to properly screen and advise them about the risks of genetic disease, thereby preventing them from making an informed decision about whether to continue the pregnancy. Such claims depend on a number of factors including religious and social beliefs, the detectability of the genetic defect, and the seriousness of the resultant genetic injuries.

Where does the malpractice occur?

Wrongful life and wrongful birth suits may arise from situations in which medical professionals fail to:

• Take an appropriate family and genetic history
• Recommend a genetic test
• Properly conduct a test
• Accurately interpret test results
• Provide parents with information gleaned from the test
• Follow up on warning signs

Malpractice can occur in a variety of medical settings, from the doctor’s office to the laboratory. These fact-intensive cases are very complex and warrant a thorough review of all the facts associated with the pregnancy.

Could this have been prevented?

Proper genetic testing can screen for diseases such as:

• Canavan disease
• Congenital heart defects
• Cystic fibrosis
• Down’s syndrome
• Sickle cell anemia
• Spina bifida
• Tay-Sachs disease

Parents facing the birth of a child who suffers from a severe (and preventable) defect may face extraordinary hardships, financial and otherwise. New Jersey law may offer a remedy that can help.