Prenatal diagnoses of sex chromosome conditionsBMJ 2001; 322 doi: https://doi.org/10.1136/bmj.322.7284.441 (Published 24 February 2001) Cite this as: BMJ 2001;322:441
Parents need more than just accurate information
- Barbara Biesecker, genetic counsellor (firstname.lastname@example.org)
- National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20892-1253, USA
Papers p 463
Women who receive a prenatal diagnosis of a chromosome abnormality remember the circumstances precisely. Years later they recall the exact words used to deliver the news, and many regret the manner in which they were told.1 They read between the lines messages that their fetus is no longer worthy of life and that their feelings about the pregnancy are not important. A test result showing that a fetus has a chromosomal difference leaves women and their partners with a permanent and life altering decision whether or not to continue the pregnancy. What do women and their partners need to make a decision that they can accept for the rest of their lives? How can healthcare providers best help them? A paper in this week's journal represents a first attempt at understanding this process (p 463),2 with disturbing results.
Prenatal testing for chromosomal conditions has been offered in industrialised nations since the 1970s. Yet little research has been done on pretest counselling, the communication of abnormal results, their impact on parents' decision making, or the long term outcomes of such decisions. Prenatal genetic counselling is provided by several different healthcare providers, including genetic counsellors, obstetric nurses, obstetricians, and maternal-fetal medicine specialists. In the United States practice is widely variable.3 Often …