Genetic Counseling for Sex Chromosome Anomalies (SCAs) in Israel and Germany: Assessing Medical Risks According to the Importance of Fertility in Two Cultures

Abstract

In this article, I report findings from a comparative study of Israeli and German genetic counselors. Specifically, it concerns counselors' attitudes and risk assessments relating to prenatal diagnosis of sex chromosome anomalies (SCAs) such as Klinefelter and Turner syndromes. Data collected through in-depth interviews with counselors in both countries (N = 32) are presented, and the types of claims experts deploy in their personal and professional estimation of the risks involved in SCAs are analyzed. The article concludes by suggesting that the counselors rhetoric concerning SCAs, whose major manifestation is the future infertility of the unborn child as well as their estimations of the related risks, should be situated in a broader cultural context, that of local Israeli and German understandings of the importance of fertility, and not in their professional nondirective ethos. Hence, to understand the practice of genetic counselors in two late-modern societies, one must understand the unique relationship between the individual bodies of pregnant women and the body politics of their nations, a relationship mediated by the counselors, who are the bearers of knowledge and expertise in this field.

Triple X syndrome: a review of the literature

“…93,94 For instance, in Israel, high rates of termination are reported, 95 but low rates are reported in Germany. 96,97 The reports on development in unbiased groups with SCA seem to be responsible for a trend of a decline in termination rates. [98][99][100][101] In neonatal cases with malformations, there are no reports on prevalence numbers that exceed the population risk.…”

Parents' dilemmas and decision making on the outcome of pregnancy after prenatal diagnoses of fetal anomalies

“…Princip nedirektivnosti bazira se na etičkom principu poštovanja autonomije, koji se odnosi na pravo osobe na slobodu, privatnost i donošenje odluka. Odgovornost za genetske odluke se prenosi sa profesionalaca na pacijenta, čija se autonomija vrednuje (Hashiloni-Dolev, 2006). Uloga savetnika je da roditeljima pruži sve potrebne informacije, pri čemu 96 PSIHOLOŠKA ISTRAŽIVANJA VOL.…”

“…Uprkos njegovoj moralnoj zasnovanosti, savetnicima u praksi je često teško da ispoštuju princip nedirektivnosti. Na savetodavnu praksu ovih stručnjaka utiče kompleksan sklop sociokulturnih, istorijskih i političkih dimenzija njihovog okruženja, kao što su: stavovi prema osobama sa ometenošću i važnosti reprodukcije, religiozni uticaji, nacionalna reprodiktivna politika i dr. (Hashiloni-Dolev, 2006;Ivry, 2006). Sa druge strane, roditelji neretko insistiraju da im stručnjaci daju konkretan savet ili uputstvo šta da rade i mogu se osećati napuštenim ili neshvaćenim u situacijama kada savetnici to ne učine (Dimavicius, 1998, prema Statham et al, 2000.…”

Selektive utfordringer ved assistert befruktning for personer med Klinefelter syndrom

“…Samtydig er helsepersonellets kompetanse ved post-diagnostisk veiledning avgjørende for hvor mange som velger å avslutte svangerskapet (Marteau et al 2002). Fertilitetens kulturelle betydning er viktig for oppfatningen av kromosomavvik ved KS, både i befolkningen og blant profesjonelle (Hashiloni-Dolev 2006). Det er dessuten store variasjoner i hvordan slektninger oppfatter genetisk informasjon, og hvordan de oppfatter syndromer (Whitmarsh 2007).…”