University of Oslo - New Possibilities and new Challenges pertaining to PGD and Newborn Screening
Newborn screening is implemented in most European countries and makes it possible to avoid serious metabolic diseases. Traditionally most countries screened for PKU and congenital hypothyroidism (CH). However new technology, such as tandem mass spectroscopy, facilitates screening for a series of other metabolic diseases. Most of these test are metabolic (non-genetic), but the diseases are of genetic origin. Expanding today’s screening poses a series of important moral questions and choices:
• Should screening be mandatory?
• Do we need informed consent?
• How to inform the population and protect their right to confidentiality?
• How should we handle genetic information relevant for relatives?
• Is it possible to uphold a divide between genetic and non-genetic tests? I.e., does newborn screening tests undermine genetic exceptionalism?
• Do we have to revise traditional screening criteria (WHO 1968)?
These issues are addressed quite differently in European countries and internationally. Against this backdrop Oslo will in part focus on ethical challenges with (newborn) screening. Newborn screening will be used as a case to illustrate some of the basic dilemmas with screening.
