Consumerism in prenatal diagnosis: a challenge for ethical guidelines

Henn, Wolfram

doi:10.1136/jme.26.6.444

Cited by 27 publications

(17 citation statements)

References 26 publications

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“…Some authors have coined the expression 'prenatal consumerism' [36] to describe this tendency, but other Modified from Bellieni et al [11]. * p = 0.0018; ** p < 0.01; *** p < 0.001; **** p < 0.001.…”

Section: Discussionmentioning

confidence: 99%

Consumerism in Prenatal Diagnosis? A Local Italian Study

Bellieni¹,

Maffei²,

Brogna³

et al. 2008

Fetal Diagn Ther

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Aim: To assess the causes of excessive use of prenatal diagnosis. Material and Methods: 304 questionnaires were completed anonymously by puerperae in a Siena (Italy) hospital in May–August 2006. The questionnaires contained 24 questions about the women, examinations performed during pregnancy and the reasons for them. Results: The mean number of ultrasound examinations per woman was 6.5 ± 2.5. Forty-two percent of the women in our sample (29.3% of women under 35 and 68.9% of women over 35 years of age) reported that amniocentesis/CVS had been performed; the mean age of these women was 34.1 ± 4.5 years. Eighty-five percent of the women under 36 years of age who had amniocentesis declared that it was performed as a personal choice and 15% for the presence of risk factors. Among 131 women who performed amniocentesis, 32 performed it with a normal blood screening for Down syndrome (DS), and 76 declared to have performed no blood screening for DS. Only 45% of women stated that they thought age above 35 years was a risk factor for pregnancy, but most of them (75%) were aware that amniocentesis was performed to detect chromosomal anomalies. In 89% of the cases a source of information about prenatal testing was the woman’s gynecologist. Conclusion: This study shows that the high use of prenatal examinations is often not justified by the presence of clinical risk factors and that both national health system and caregivers should find new strategies to inform women about the aims of prenatal tests, and promote a more serene approach to pregnancy. A broader study is needed to confirm these data.

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Section: Discussionmentioning

confidence: 99%

Consumerism in Prenatal Diagnosis? A Local Italian Study

Bellieni¹,

Maffei²,

Brogna³

et al. 2008

Fetal Diagn Ther

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“…There has been significant discussion in many countries and by the World Health Organization regarding the limitation of prenatal testing and assisted reproductive options such as preimplantation genetic diagnosis (PGD) to severe diseases that will have a large and immediate impact on the health of the child. 43,44 Still, genetic selection for 'benign' traits has been deemed acceptable under certain conditions including benefit to the child, equal access to services, and the absence of clear disadvantage. 45 There are several ethical dilemmas inherent to limiting genetic testing for reproductive purposes (prenatal testing for PDG), and the line between disease and trait can be blurred.…”

Section: Discussionmentioning

confidence: 99%

Nondisease genetic testing: reporting of muscle SNPs shows effects on self-concept and health orientation scales

et al. 2005

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The purpose of this study was to assess the impact of genetic self-knowledge (nondisease genotype information) on individual self-concept and Health Orientation Scale (HOS). Adult volunteers (n ¼ 257) were recruited from an ongoing genetic association study identifying muscle quantitative trait loci (QTLs). Participants completed psychosocial assessments before and after 12 weeks of resistance training of the nondominant arm. At study exit, a genetic counselor informed participants of genetic test results on three to four genes that have an association with muscle-related traits, and counseled subjects on the potential significance of these findings. The second psychosocial assessment was performed immediately following this counseling session. The Tennessee Self-Concept Scale v.2 (TSCS:2) and the HOS showed female subjects to have a significantly greater positive change between first and second assessments, relative to male subjects. Most self-concept subscales improved significantly, when 'neutral' genotypes (no anticipated beneficial or deleterious impact) were reported, compared to positive genotypes. TSCS:2 subscales showing improvement included: total (P ¼ 0.013); physical (P ¼ 0.004); satisfaction (P ¼ 0.019); and behavioral (P ¼ 0.047). HOS subscales showing improvement included health image concern (P ¼ 0.006); and health expectations (P ¼ 0.047). In conclusion, these results suggest that genetic selfknowledge affects self-concept, consistent with the 'attribution' theory. Individuals who received neutral genetic information attributed positive changes from the exercise program to their own abilities, while those who received positive information were more likely to attribute positive changes to their genetics. This study is limited by the ability to determine the direction of the impact of nondisease genetic information presented to participants. 1 -6 Such companies claim to provide genetic self-knowledge that will enable the individual to optimize their lifestyle. The validity of such claims are questionable, but the prevalence of these companies attests to the probability that testing for genes not directly related to disease will become increasingly common, if not commonplace. It is not clear how such genetic self-knowledge might affect self-concept and health perception especially when the testing is for genetic traits not related to disease. Our current understanding of the impact of genetic selfknowledge on self-concept and health perception stems from testing for genetic disease, specifically presymptomatic diagnosis (eg Huntington's disease (HD)), and carrier status for recessive conditions (Cystic fibrosis, Tay Sachs). Psychological changes in self-concept have been observed in response to carrier testing for Tay Sachs in high school students.7 Tay Sachs carriers in another study, had a significantly less optimistic view of their own future health (Po0.01) than noncarriers or the random control group. 8In a study of carriers for sickle cell trait, there was a belief by noncarriers, that carrie...

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“…Some experts see non-DNA related procedures (e.g., ultrasound) as genetic technologies because, as earlier research has shown (Ettorre, 2002), these are linked procedurally in reproductive medicine. It has been argued that prenatal technologies are ethically the most difficult applications of genetics (Henn 2000).…”

Section: What Are Prenatal Genetic Technologies?mentioning

confidence: 99%

Prenatal Genetic Technologies and the Social Control of Pregnant Women: A Review of the Key Issues

Ettorre

2009

Marriage & Family Review

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This article provides a review of literature of articles and texts on prenatal genetic technologies and is limited specifically to research that focuses on the intersection between the dynamics of prenatal screening; the regulation of family life and reproduction; the issues of disabilities, risk, and shame; embodied affect; and contemporary molecular medicine. Three themes emerge from the literature: the fact that these technologies have a transformative impact on the social process of human reproduction, are powerful ways of regulating family normality and health, and have the unintended consequence of dividing women into ''good'' and ''bad'' reproducers. It is argued that in reviewing the literature it is important to take a critical focus to expose some of the repressive dynamics embedded in the diffusion and proliferation of these technologies.

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Consumerism in prenatal diagnosis: a challenge for ethical guidelines

Abstract: Abstract

Cited by 27 publications

References 26 publications

Consumerism in Prenatal Diagnosis? A Local Italian Study

Consumerism in Prenatal Diagnosis? A Local Italian Study

Nondisease genetic testing: reporting of muscle SNPs shows effects on self-concept and health orientation scales

Prenatal Genetic Technologies and the Social Control of Pregnant Women: A Review of the Key Issues

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