Cystic fibrosis carrier screening in Veneto (Italy): an ethical analysis

Med Health Care Philos. 2012 Aug;15(3):321-8. doi: 10.1007/s11019-011-9347-7.

Abstract

A recent study by Castellani et al. (JAMA 302(23):2573-2579, 2009) describes the population-level effects of the choices of individuals who underwent molecular carrier screening for cystic fibrosis (CF) in Veneto, in the northeastern part of Italy, between 1993 and 2007. We discuss some of the ethical issues raised by the policies and individual choices that are the subject of this study. In particular, (1) we discuss the ethical issues raised by the acquisition of genetic information through antenatal carrier testing; (2) we consider whether by choosing to procreate naturally these couples can harm the resulting child and/or other members of society, and what the moral implications of such harm would be; (3) we consider whether by choosing to avoid natural procreation carrier couples can harm current or future individuals affected by cystic fibrosis; (4) we discuss whether programs that make carrier testing available can be considered eugenic programs.

MeSH terms

  • Cystic Fibrosis / diagnosis*
  • Cystic Fibrosis / genetics*
  • Cystic Fibrosis / prevention & control
  • Decision Making / ethics*
  • Disabled Persons
  • Ethical Analysis
  • Eugenics
  • Genetic Carrier Screening*
  • Genetic Counseling
  • Genetic Testing / ethics*
  • Humans
  • Italy
  • Personal Autonomy
  • Prenatal Diagnosis / ethics*
  • Reproductive Behavior / ethics*