untreatable disorders, newborns, health law, genetic discrimination
Health Law and Policy | Law
This movie makes two important points despite its admitted unreality. The first, which the screen writer probably did not fully appreciate at the time, is that genetic testing cannot now and probably will never be able to predict with complete certainty the occurrence and course of complex diseases. It is not true that "Genes-R-Us." Rather, we are the products of complex interactions of our genes, the genomes of other organisms (many of which we live in relation with), and the environment, broadly understood to include the air we breathe, the water we drink, the food we eat, the drugs we take, our social structures, and our cultural practices. Moreover, the effects of these interactions can vary depending on when they occur in the lifecycle. For example, it appears that caloric deprivation during pregnancy may predispose children to a host of health problems later on, whereas the same deprivation during adulthood might be life prolonging. As a result, even the most sophisticated genetic analysis at birth is not going to reveal everything about a person's future health. The other lesson of GATTACA, the ultimate of a genetic essentialist dystopia, is the importance of characteristics of the society in which the information is being used. Why might we want to screen newborns for untreatable disorders? Here the excellent paper by Bailey et al. in Pediatrics is particularly thoughtful.
In this article, the authors discuss a number of arguments for newborn screening for these problems. These include avoiding delays in diagnosis often after numerous consultations, providing parents with information about their children's health, allowing the earlier initiation of interventions, learning more about the natural history of these disorders, providing reproductive information to the family, and creating more opportunities to support these families.
Ellen Wright Clayton,
Ten Fingers, Ten Toes: Newborn Screening for Untreatable Disorders, 19 Health Matrix. 199
Available at: https://scholarship.law.vanderbilt.edu/faculty-publications/1284