A Personal Perspective

Abstract

I believe in the value of information and in the individual's fight to know as much as possible about herself and her future. However, the decision by a panel of experts convened by the National Institutes of Health ("NIH") that all pregnant couples or couples planning a pregnancy should be offered genetic testing to detect the presence of the gene that causes cystic fibrosis ("CF") has caused me to reevaluate this .J=~:central tenet) In my opinion, this panel's decision to recommend that pei3ple obtain genetic tests e.nd use them to essentially reduce the number of children who are born with CF is inappropriate. It is one thing for individuals ~.o determine how to use this information for their own lives, but quite another thing for society to dictate how this information should be used. I fear the inappropriate use of prenatal testing for CF will unnecessarily reduce the number of people with CF and undermine incentives for the development of a cure for this disease. I challenge the appropriateness of the recommendation that prenatal testing for CF be offered to all pregnant couples, especially in the absence of reliable mechanismsto ensure truly informed decisions. We, as a society, should focus on developing new treatments for CF and other genetic conditions, rather than encouraging the use of prenatal genetic tests to eliminate the disease. Given the premium society places on "perfection" and the absence of adequate social acceptance and support for people who are less than perfect, prenatal CF testing may actually reduce parental choice by subtly conveying that it is unacceptable for someone to bear a child with an imperfection that could have been prevented, albeit by preventing the birth if~lf. ~.~ r