Choosing not to choose: reproductive responses of parents of children with genetic conditions or impairments

Sociology of Health & Illness
Susan E Kelly

Abstract

Parents of children with genetic conditions or impairments stand in a unique position with regard to choices and dilemmas posed by prenatal screening and testing options offered to at-risk parents as a means to a 'healthy' baby. This article reports the results of a qualitative study of parents whose children are clients of a state-wide rural genetic outreach programme in the US. The analysis seeks to connect the lived experience of parents of children with genetic conditions or impairments to choices with which women are confronted as prenatal testing technologies continue to proliferate. It reports the finding that a majority of parents in the study chose not to choose: avoiding future pregnancies, declining prenatal testing for subsequent pregnancies, or limiting testing to 'for information only'. These decisions do not reflect simple rejection of medical intervention, opposition to abortion, and/or affirmation of a positive parenting experience with an affected child. Rather, choosing to avoid the condition of choice appears to be a strategy of responsible parenting that emerges from ambivalence towards the options presented by reproductive technologies.

References

Aug 1, 1991·American Journal of Public Health·D C WertzR W Erbe
Mar 1, 1988·Clinical Genetics·G Evers-KieboomsH van den Berghe
Feb 1, 1996·Social Science & Medicine·M Sandelowski, L C Jones
Jan 1, 1996·European Journal of Human Genetics : EJHG·R SalonenM Lappalainen
Jun 1, 1996·Birth·P SantalahtiE Hemminki
Oct 1, 1997·Social Science & Medicine·N Press, C H Browner
Apr 2, 1998·BMJ : British Medical Journal·T M Marteau, R T Croyle
Oct 3, 1998·BMJ : British Medical Journal·D MuttonE Alberman
Mar 17, 1999·Biochimica Et Biophysica Acta·B TenchovG Rapp
Jul 22, 1999·Social Science & Medicine·S MarkensN Press
Apr 1, 1993·Fetal Diagnosis and Therapy·Barbara Katz Rothman
Oct 20, 2001·Science, Technology & Human Values·Rayna Rapp
Mar 26, 2003·Social Science & Medicine·Gail Landsman
Mar 26, 2003·Social Science & Medicine·Susan L Erikson
Aug 10, 2004·Health Technology Assessment : HTA·J M GreenH S Cuckle
May 7, 2005·The Journal of Medical Humanities·Gail Landsman
Nov 4, 2006·BMJ : British Medical Journal·Tricia Sloper, Bryony Beresford

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Citations

Oct 26, 2012·Journal of Community Genetics·Chantelle Jennifer ScottAmbroise Wonkam
Nov 29, 2012·European Journal of Human Genetics : EJHG·Zuzana DeansCeline Lewis
Mar 25, 2014·Women and Birth : Journal of the Australian College of Midwives·Vanessa Dixon, Nadya Burton
Dec 12, 2012·Annals of Behavioral Medicine : a Publication of the Society of Behavioral Medicine·Jennifer L Howell, James A Shepperd
Feb 13, 2016·Sociology of Health & Illness·Daniele CarrieriPeter Turnpenny
Dec 20, 2014·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Tina-Marié WesselsClaire Penn
Aug 13, 2011·Social Science & Medicine·Mara Buchbinder, Stefan Timmermans
Feb 22, 2011·Social Science & Medicine·Kelly Amanda Raspberry, Debra Skinner
Mar 11, 2016·Journal of Genetic Counseling·Melissa RaspaDonald B Bailey
Nov 9, 2010·Sociology of Health & Illness·Kelly Raspberry, Debra Skinner
Nov 7, 2009·Sociology of Health & Illness·Susan MarkensH Mabel Preloran
Jul 24, 2012·AJOB Primary Research·Dorit BarlevySiobhan M Dolan
Jul 26, 2013·Public Understanding of Science·Hannah R Farrimond, Susan E Kelly
Nov 4, 2016·Qualitative Health Research·Allison Werner-LinBarbara A Bernhardt
Nov 19, 2011·Public Health Genomics·S E Kelly, H R Farrimond
Sep 10, 2018·Molecular Genetics & Genomic Medicine·Felicity K Boardman, Rachel Hale
Dec 4, 2019·Disability and Rehabilitation·Elodie BrugalléCarole Fantini-Hauwel
Jul 1, 2017·Journal of Health and Social Behavior·Stefan Timmermans, Tanya Stivers
Feb 26, 2016·Culture, Medicine and Psychiatry·Elly TemanHeela Goren
Feb 8, 2018·Ciência & saúde coletiva·Waleska de Araújo Aureliano
Jun 28, 2018·Journal of Community Genetics·Angus J Clarke, Carina Wallgren-Pettersson

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