Decision-making about reproductive choices among individuals at-risk for Huntington's disease.
We explored how individuals at-risk for HD who have or have not been tested make reproductive decisions and what factors are involved. We interviewed 21 individuals (8 with and 4 without the mutation, and 9 un-tested) in-depth for 2 hours each. At-risk individuals faced a difficult series of dilemmas of whether to: get pregnant and deliver, have fetal testing, have pre-implantation genetic diagnosis, adopt, or have no children. These individuals weighed competing desires and concerns: their own desires vs. those of spouses vs. broader moral concerns (e.g., to end the disease; and/or follow dictates against abortion) vs. perceptions of the interests of current or future offspring. Quandaries arose of how much and to whom to feel responsible. Some changed their perspectives over time (e.g., first "gambling," then being more cautious). These data have critical implications for genetic counselors and other health care workers and future research, particularly as more genetic tests become available.
Klitzman
Robert
R
College of Physicians and Surgeons and Mailman School of Public Health, Columbia University, New York, NY, USA. rlk2@columbia.edu
Thorne
Deborah
D
Williamson
Jennifer
J
Chung
Wendy
W
Marder
Karen
K
D000025:Abortion, Eugenic / Q000523:psychology*; D000223:Adaptation, Psychological; D000649:Amniocentesis / Q000523:psychology*; D015193:Chorionic Villi Sampling / Q000523:psychology*; D004252:DNA Mutational Analysis; D003657:Decision Making; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D005820:Genetic Testing / Q000523:psychology*; D006167:Guilt; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis / Q000235:genetics* / Q000517:prevention & control; D008297:Male; D009014:Morals; D011247:Pregnancy; D019836:Preimplantation Diagnosis / Q000523:psychology*; D043762:Reproductive Behavior / Q000523:psychology*; D018570:Risk Assessment