Selective Abortion for Down Syndrome: The Relation Between the Quality of Intergroup Contact,Parenting Expectations,and Willingness to Terminate

This study examines the links between familiarity with individuals with Down syndrome (DS), perceptions of parenting a child with DS, and willingness to consider selective termination subsequent to a fetal diagnosis of DS. Within a sample of childless young adults (N = 280), those reporting personal familiarity indicated both more positive attitudes toward parenting a child with DS and more certainty that they would not abort following a prenatal diagnosis. In further support of contact theory, the quality of the past intergroup interactions moderated these findings. The potential role of negative stereotypes in selective‐abortion decision making and implications for prenatal counseling protocols are discussed.     

What Do Parents of Children with Down Syndrome Think about Non-Invasive Prenatal Testing (NIPT)?

This study explores the attitudes of parents of children with Down syndrome towards non-invasive prenatal testing (NIPT) and widening the scope of prenatal screening. Three focus groups (n = 16) and eleven individual interviews with Dutch parents (and two relatives) of children with Down syndrome were conducted. Safety, accuracy and earlier testing were seen as the advantages of NIPT. Some participants were critical about the practice of screening for Down syndrome, but acknowledged that NIPT enables people to know whether the fetus is affected and to prepare without risking miscarriage. Many feared uncritical use of NIPT and more abortions for Down syndrome. Concerns included the consequences for the acceptance of and facilities for children with Down syndrome, resulting in more people deciding to screen. Participants stressed the importance of good counseling and balanced, accurate information about Down syndrome. Testing for more disorders might divert the focus away from Down syndrome, but participants worried about “where to draw the line”. They also feared a loss of diversity in society. Findings show that, while parents acknowledge that NIPT offers a better and safer option to know whether the fetus is affected, they also have concerns about NIPT’s impact on the acceptance and care of children with Down syndrome.     

Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing

Noninvasive prenatal testing (NIPT) allows for highly sensitive detection of Down syndrome early in pregnancy with no risk of miscarriage, therefore potentially increasing the number of pregnancies identified with Down syndrome. This study assesses how mothers of children with Down syndrome perceive NIPT, especially the impact they think it will have on their families and other families with children who have Down syndrome. Seventy-three self-reported mothers of children with Down syndrome responded to an anonymous online survey emailed to, and posted on, message boards of various Down syndrome support groups and networks. Data analysis included chi-square tests and thematic analysis. Fifty-nine percent of respondents indicated they would use NIPT in the future; respondents who had not used prenatal testing in the past were significantly less likely to report interest in using NIPT in the future than those who had prenatal testing previously (p?MOST important factor. They also highlight the need to provide a diagnosis of Down syndrome in a balanced and objective manner.     

The Decision to Continue a Pregnancy Affected by Down Syndrome: Timing of Decision and Satisfaction with Receiving a Prenatal Diagnosis

In order to provide the best genetic counseling possible for women who learn of a diagnosis of Down syndrome prenatally, we sought to assess the timing of the decision to continue a pregnancy and the satisfaction these women had with learning this information. Fifty-six mothers of children with Down syndrome diagnosed prenatally between 2007 and 2010 completed a survey regarding their experience with decision-making after prenatal diagnosis. Approximately one third (17/56) of participants reported they knew before getting pregnant that they would not terminate for any reason, and almost half of the participants (24/56) reported they did not decide to continue their pregnancy until after the diagnosis. Many participants (82 %; 42/56) stated that learning the diagnosis during pregnancy increased their anxiety. The majority (88 %; 45/56) also reported that if they could do it over again, they would undergo prenatal testing for preparation purposes, despite increased anxiety. Religious and spiritual beliefs as well as feeling attached to the baby were the personal factors that had the greatest impact on most women’s decision-making. Despite increased anxiety caused by learning the diagnosis prenatally, most women favored prenatal diagnosis as it allowed them time to process the information and prepare for the birth of their child.     

Talking about Disability in Prenatal Genetic Counseling: A Report of Two Interactive Workshops

Women are commonly offered testing in pregnancy to determine the health of their baby. An important component of informed decision-making about prenatal testing is provision of relevant, accurate, meaningful information concerning the conditions that are being tested for—many of which, such as Down syndrome, are associated with a varying degree of physical and intellectual disability. A range of health professionals, including genetic counselors, may provide information and support throughout the testing process, but available data suggest that discussion of disability is frequently absent or limited. To investigate genetic counselors’ perceptions of this situation and identify potential barriers to discussion we facilitated interactive workshops at the 2007 National Society of Genetic Counselors Annual Education Conference (NSGC) and the 2008 European Meeting on Psychosocial Aspects of Genetics (EMPAG). Working groups identified relevant psychosocial issues and impediments to discussion (NSGC) or used a two-part scenario to promote discussion (EMPAG) and reported findings in notes and a closing plenary discussion. Inductive content analysis revealed that participants considered informed decision making to be a major reason for presenting information about disabilities in prenatal genetic counseling and endorsed the value of including information about daily life with Down syndrome and other disabilities. However, they identified three broad types of impediments to such discussion: counseling issues concerning the most appropriate manner to discuss disability under the complex circumstances of prenatal genetic counseling, less than optimal training and experience in addressing these issues, and perceived limitations in the participants’ knowledge and understanding of life with disability. Our analysis of the responses from the workshop participants and additional thoughts on these issues have led us to develop recommendations for further research, training and clinical practice.     

Overconfidence in Initial Self-Efficacy Judgments: Effects on Decision Processes and Performance

Judgments of task-specific, expected performance (i.e., self-efficacy) can affect the activities one chooses to pursue and the extent of effort devoted to these activities. However, relatively little is known about the accuracy of self-efficacy judgments or their effects on behavior, performance, and perceptions of performance in complex cognitive tasks. The results of a pilot study and experiment indicate that initial, "first-impression" self-efficacy judgments made in cognitively complex tasks are biased toward overestimates of personal ability (i.e., "overconfidence"). The experiment manipulated performance expectations to illuminate how overestimates of initial self-efficacy affect decision making. Inducing positive expectations produced overconfidence in choice accuracy, but did not increase effort, attention to strategy, or performance relative to mildly negative and strongly negative expectations. In contrast, inducing mildly negative expectations increased effort, attention to strategy, and performance relative to strongly negative expectations. The results suggest that the demotivational effects of initial negative expectations are more robust than the motivational effects of initial positive expectations. ln addition, inducing mildly negative expectations may improve performance more than positive expectations in at least some tasks and settings.     

Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors

Down syndrome is one of the most common conditions encountered in the genetics clinic. Due to improvements in healthcare, educational opportunities, and community inclusion over the past 30?years, the life expectancy and quality of life for individuals with Down syndrome have significantly improved. As prenatal screening and diagnostic techniques have become more enhanced and widely available, genetic counselors can expect to frequently provide information and support following a new diagnosis of Down syndrome. This guideline was written for genetic counselors and other healthcare providers regarding the communication of a diagnosis of Down syndrome to ensure that families are consistently given up-to-date and balanced information about the condition, delivered in a supportive and respectful manner.     

Parents attributions of blame for the birth of a child with down syndrome: A pilot study

Abstract

Attributing blame to others for negative events is consistently associated with poor adjustment. We report here a study assessing whether failure to detect a problem on screening, in this case Down syndrome not detected during prenatal screening, is associated with blame and poor adjustment in parents. Twenty eight mothers and 23 fathers of children with Down syndrome were interviewed. Although no parent blamed themselves or their partner, eight fathers and five mothers blamed health professionals or the health care system in general for not preventing the birth of their children with Down syndrome prenatally. None of the parents who declined testing were blaming. Six of the 11 parents who received a negative test and seven of the 34 not offered a test blamed others. Both mothers and fathers who blamed others reported significantly higher parenting stress. Mothers, but not fathers, who blamed others were significantly more angry and depressed than those who did not.     

Predictors of interest in direct-to-consumer genetic testing

Direct-to-consumer (DTC) genetic testing is an increasingly available option among individuals searching for information about their health risk factors and ancestry. This study is one of the first to examine predictors of interest in DTC genetic testing. Participants read one of the three types of information about DTC genetic testing (positive only, negative only or both) and reported perceptions of and intentions to pursue testing. The information which people read, their perceptions of the benefits of testing, their perceptions of the barriers to testing and anticipated regret predicted intentions to undergo testing. Interestingly, people who read both positive and negative information did not differ from people who read only negative information in their intentions to pursue testing. We discuss the implications of these findings for predicting interest in this relatively new type of genetic testing and for designing interventions to encourage (or discourage) testing.     

Predictors of interest in direct-to-consumer genetic testing

Direct-to-consumer (DTC) genetic testing is an increasingly available option among individuals searching for information about their health risk factors and ancestry. This study is one of the first to examine predictors of interest in DTC genetic testing. Participants read one of the three types of information about DTC genetic testing (positive only, negative only or both) and reported perceptions of and intentions to pursue testing. The information which people read, their perceptions of the benefits of testing, their perceptions of the barriers to testing and anticipated regret predicted intentions to undergo testing. Interestingly, people who read both positive and negative information did not differ from people who read only negative information in their intentions to pursue testing. We discuss the implications of these findings for predicting interest in this relatively new type of genetic testing and for designing interventions to encourage (or discourage) testing.     

The Effect of Emotion on Visual Attention to Information and Decision Making in the Context of Informed Consent Process for Clinical Trials

The aim of this study was to examine the influence of emotion on visual information processing and decision making in the context of informed consent. Researchers are ethically obligated to ensure informed consent in clinical trials; however, many volunteers have unrealistic expectations about the value of an experimental therapy. Moreover, suboptimal participation rates for clinical trials may be partially attributable to perceptions that ethical obligations to volunteers are not met. This study examines whether discrete negative emotions (fear, anger, and sadness) differentially influence information processing, visual attention, and decisions in the context of clinical trial informed consent. Community participants completed a standard emotion induction (or control) and then read an actual consent form from a clinical trial while eye movements were tracked. Fear and anger produced the most prominently different patterns of systematic processing and visual attention, such that fear induced longer fixations to information presented, whereas anger induced shorter fixations. Moreover, among women only, fear increased decisions to participate, compared with anger and neutral emotion. Examinations of associations between eye‐tracking variables and self‐reported outcomes indicated that for angry participants only, less systematic processing was associated with greater decisions to participate. Negative emotions of any kind decreased accurate perceptions of trial benefit. These patterns suggest a complex interplay among emotion, processing style, and decision making. Future research is necessary to further probe these effects among potential clinical trial volunteers. Published 2016. This article is a U.S Government work and is in the public domain in the USA.     

Fathers' views of the effects on their families of children with Down syndrome

This study examined fathers' views about the effects of children with Down syndrome on themselves and their families. Taped interviews were obtained from 90 fathers of children aged from 7 to 14 years. Qualitative analysis of the interview data revealed 28 categories of comments made by fathers. The most frequent comment, made by 46% of fathers, was about the cheerful personality of their child with Down syndrome. About 42% of fathers talked about the initial trauma they experienced following the diagnosis; 43% of them bemoaned the restrictions imposed on the family, and 30% commented that the child had minimal effects on family life. The greatest concern expressed by fathers was the long-term provision for their children. More fathers commented on the positive effects on their marriage than on negative effects. The results of this study provide a somewhat different view of fathers' experiences to that found in the existing literature.     

Avoiding Misinformation: Reinstating Target Modality

Explanations of the misinformation effect were considered in an experiment using a reversed eyewitness suggestibility design (Lindsay & Johnson, 1989b). Forty-eight subjects read a narrative describing a photograph that they subsequently viewed. For half the subjects, the narrative contained misinformation. Recognition tests for objects appearing in the photograph were administered in either a verbal or a pictorial modality. A misinformation effect was found in the verbal condition, as found by Lindsay and Johnson. With pictorial probes there was no misinformation effect, indicating that reinstatement of the appropriate modality cues can eliminate the influence of misleading post-event information upon memory and permit the retrieval of the target memory. The experiment was conceived of and discussed within the headed records framework.     

The Perceptions of Lutheran Pastors Toward Prenatal Genetic Counseling and Pastoral Care

The purpose of this study is to explore a theological perspective toward genetic counseling. A survey was sent to 207 ministers within the Evangelical Lutheran Church of America (ELCA), to determine their perspectives toward four different scenarios in a prenatal genetic counseling setting. The four different scenarios included situations involving Huntington disease, Down syndrome, trisomy 18, and anencephaly. Nearly all ELCA Lutheran pastors perceived genetic counseling as beneficial and useful and wanted to be involved in the decision-making process for whether or not to terminate the pregnancy. Their views toward termination of pregnancy varied depending on the severity of the genetic abnormality. Severity in this study was based upon life compatibility. As the severity of the genetic abnormality increased, the percentage of Lutheran pastors who viewed termination as an option increased from 23% (Down syndrome) to 62% (anencephaly). A better understanding of how spiritual leaders view genetic counseling would provide an insight into how genetics and religious beliefs together play a significant role in shaping the decisions of those faced with abnormal pregnancies.     

The role of attitudes towards the targets of behaviour in predicting and informing prenatal testing choices

Research considering the role of attitudes in prenatal testing choices has commonly focused on the relationship between the attitude towards undergoing testing and actual testing behaviour. In contrast, this study focused on the relationship between testing behaviour and attitudes towards the targets of the behaviour (in this case people with Down syndrome (DS) and having a baby with DS). A cross-sectional, prospective survey of 197 pregnant women measured attitudes towards the targets of prenatal testing along with intentions to use screening and diagnostic testing, and the termination of an affected pregnancy. Screening uptake was established via patient records. Although attitudes towards DS and having a baby with DS were significantly associated with screening uptake and testing and termination intentions, unfavourable attitudes were better than favourable ones at predicting these outcomes. For example, in the quartile of women with the ‘most favourable’ attitude towards people with DS 67% used screening although only 8% said they would terminate an affected pregnancy. Qualitative data suggested that not all women considered personal attitudes towards DS to be relevant to their screening decisions. This finding has implications for the way in which informed choice is currently understood and measured in the prenatal testing context.     

The impact of character attribution on composite production: A real world effect?

Facial memory draws upon both veridical detail and beliefs based upon prior knowledge and stereotypes. Shepherd, Ellis, McMurran, and Davies (1978) demonstrated that subjects' perception and subsequent reconstruction of a face using the “Photofit” kit was significantly influenced by whether they believed the person to be a multiple murderer or a local hero. The current study explored whether similar effects would occur when the face involved was one of four male celebrities about which subjects held pronounced positive or negative views and where reconstruction was accomplished using the computerised “E-fit” composite system. Semantic differential ratings showed significant influences of liking on subjects' perception and reconstruction of the faces involved, though the pattern of effects was not always readily predictable. Liking also influenced accuracy of reconstruction; ranking and naming data showed that the best composites were made by subjects who disliked the target and made their reconstructions with the aid of a photograph.     

The impact of character attribution on composite production: A real world effect?

Facial memory draws upon both veridical detail and beliefs based upon prior knowledge and stereotypes. Shepherd, Ellis, McMurran, and Davies (1978) demonstrated that subjects' perception and subsequent reconstruction of a face using the “Photofit” kit was significantly influenced by whether they believed the person to be a multiple murderer or a local hero. The current study explored whether similar effects would occur when the face involved was one of four male celebrities about which subjects held pronounced positive or negative views and where reconstruction was accomplished using the computerised “E-fit” composite system. Semantic differential ratings showed significant influences of liking on subjects' perception and reconstruction of the faces involved, though the pattern of effects was not always readily predictable. Liking also influenced accuracy of reconstruction; ranking and naming data showed that the best composites were made by subjects who disliked the target and made their reconstructions with the aid of a photograph.     

Counteracting Media's Thin-Body Ideal for Adolescent Girls: Informing Is More Effective Than Warning

The present study investigated whether information or warnings about depictions of the thin-body ideal in mass media are effective in counteracting media-induced negative body perceptions of adolescent girls. Based on counter-advertising and reactance theories, our hypotheses were tested in a 3 (weight labels: information vs. warning vs. no label) × 2 (media models' body shape: thin vs. normal weight) × 2 (self-esteem: lower vs. higher) design (N = 178). Body dissatisfaction, objectified body consciousness, and body comparison with media models served as dependent variables. Pretested media models were systematically combined with various textual weight labels and presented on the front page of a magazine targeted toward girls. The results indicated that a simple information label that provided the weight status of thin media models induced less negative body perceptions in adolescent girls when compared with the use of warning labels or images only. Especially, girls with lower self-esteem then exhibited lower levels of body dissatisfaction and objectified body consciousness. When compared with exposure to images only, the warning labels had little effect on body perceptions by adolescent girls. Thus, informing is more effective than warning in counteracting the undesired effects of the thin-body ideal promoted by the media.     

Promoting Positive Attitudes Toward People With Down Syndrome: The Benefit of School Inclusion Programs1

The effects of school inclusion programs on male and female nondisabled students' stereotypes and attitudes toward people with Down syndrome were studied. Nondisabled students (11–15 years of age) from schools with and without inclusion programs reported positive and negative attitudes toward people with Down syndrome. As hypothesized, girls and students attending schools with inclusion programs showed more favorable attitudes toward people with Down syndrome than did boys and students attending schools without inclusion programs, respectively. Interaction effects of school system and sex of participant suggest that boys' attitudes, in particular, benefit from inclusive schooling. The study provides evidence for the effectiveness of inclusion programs in ameliorating prejudice and intergroup anxiety; and in promoting positive attitudes, affect, and trust.