Graduate training during the COVID-19 pandemic: North American genetic counseling students' challenges, intolerance of uncertainty, and psychological well-being.

The COVID-19 pandemic has upended genetic counseling (GC) graduate students' lives, as they have been forced to transition, manage, and acclimate to life during a pandemic. The current study is a first step in understanding their lived experiences during this historic, global event. We investigated academic and personal challenges, intolerance of uncertainty, and psychological well-being of GC students (n = 248) who trained during the pandemic (GC-COV cohort) and those who did not (GC-NoCOV cohort). Participants completed an online survey (July-September 2020) that used validated measures of Intolerance of Uncertainty and Psychological Well-Being. To assess the academic and personal challenges students experienced during GC graduate training, we developed a 43-item measure. Principal axis factoring of the items revealed categories of challenges related to the following: Academic & Professional Development, Self-Regulation & Resilience, Institutional & Program Leadership, and Financial Stability. There was no cohort difference in Psychological Well-Being. Linear mixed-effects modeling showed significant cohort differences in challenges. Multiple linear regression analyses revealed that the GC-COV cohort's Psychological Well-Being was statistically significantly predicted by Institutional & Program Leadership challenges (p = .029), Self-Regulation & Resilience challenges (p = .013), and Intolerance of Uncertainty (p = .010). For the GC-NoCOV cohort, the statistically significant predictor of Psychological Well-Being was Self-Regulation & Resilience challenges (p = .029). Our findings demonstrate that GC students training during the COVID-19 pandemic have experienced various personal, academic, and psychological disruptions and highlight a need to develop resources and implement interventions supporting students' academic development and psychological well-being.

Rewards and challenges of parenting a child with Down syndrome: a qualitative study of fathers' perceptions.

AIM: Most studies on parenting children with Down syndrome and other intellectual disabilities have focused on stress and coping; however, research has shown many rewards in parenting such children. Additionally, most research has assessed mothers' rather than fathers' perspectives. To take steps toward filling these literature gaps, we asked fathers of children with Down syndrome about their parenting experiences. METHODS: Participants were 175 fathers of children with Down syndrome. Open-ended questions asked fathers what they found most rewarding and challenging about parenting a child with Down syndrome. Researchers coded responses using inductive content analysis. RESULTS: Key themes for rewards included: (1) Child's Positive Attributes and Behaviors; (2) Rewarding Father-Child Relationship; (3) Child Has Positively Changed Father; and (4) Father's Positive Relationship with Others. Key themes for challenges included: (1) Father's Thoughts, Emotions, and Behaviors; (2) Child's Challenging Behavior and Development; (3) System and Institutional Problems; and (4) Other People's Negative Attitudes/Behaviors. CONCLUSIONS: Rewards mainly concerned the father-child bond and the loving, happy child. Fathers rarely mentioned financial stressors or their children's negative behaviors. Instead, many fathers reported children's speech problems. Our findings may assist healthcare professionals in providing more beneficial resources and interventions (especially language-related ones) to families with a child with Down syndrome.Implications for rehabilitationConsistent with a positive psychology approach, fathers reported more rewards than challenges in raising a child with Down syndrome.There may be a need for greater involvement of fathers in language interventions for children with Down syndrome.Healthcare professionals can assist parents of children with Down syndrome in recognizing parenting rewards.

Recruiting African American Children for Research: An Ecological Systems Theory Approach.

With health disparities still pervasive and persistent in the United States, medical researchers and social scientists continue to develop recruitment strategies to increase the inclusion of racial/ethnic minority groups in research and interventions. Effective methods for recruiting samples of African American participants for pediatric research may be best understood when situated within an overarching conceptual model-one that serves to organize and explain effective recruitment strategies. A theoretical framework well suited for this purpose is Bronfenbrenner's ecological systems theory, which views individuals as influencing and being influenced by (both directly and indirectly) a series of interconnected social systems. Based on the ecological systems theory and on previous research from multiple domains (e.g., medicine, psychology, public health, social work), in the current article, we review strategies for effective recruitment of African American children and adolescents for research.

Non-invasive prenatal screening for trisomy 21: Consumers' perspectives.

Non-invasive prenatal screening (NIPS) has the potential to dramatically increase the prenatal detection rate of Down syndrome because of improvements in safety and accuracy over existing tests. There is concern that NIPS could lead to more negative attitudes towards Down syndrome and less support for individuals with Down syndrome. To assess the impact of NIPS on support for prenatal testing, decision-making about testing, and beliefs or attitudes about Down syndrome, we performed an Internet-based experiment using adults (N = 1,789) recruited through Amazon Mechanical Turk. Participants were randomly assigned to read a mock news article about NIPS, a mock news article about amniocentesis, or no article. The content in the two articles varied only in their descriptions of the test characteristics. Participants then answered questions about their support for testing, hypothetical testing decision, and beliefs and attitudes about Down syndrome. Reading the mock NIPS news article predicted increased hypothetical test uptake. In addition, the NIPS article group also agreed more strongly that pregnant women, in general, should utilize prenatal testing. We also found that the more strongly participants supported prenatal testing for pregnant women, the less favorable their attitudes towards individuals with Down syndrome; providing some evidence that NIPS may indirectly result in more negative perceptions of individuals with this diagnosis.

Searching for the Kinkeepers: Historian Gender, Age, and Type 2 Diabetes Family History.

Kinkeepers facilitate family communication and may be key to family medical history collection and dissemination. Middle-aged women are frequently kinkeepers. Using type 2 diabetes (T2DM) as a model, we explored whether the predicted gender and age effects of kinkeeping can be extended to family medical historians. Through a U.S. telephone survey, nondiabetic Mexican Americans (n = 385), Blacks (n = 387), and Whites (n = 396) reported family histories of T2DM. Negative binomial regressions used age and gender to predict the number of affected relatives reported. Models were examined for the gender gap, parabolic age effect, and gender-by-age interaction predicted by kinkeeping. Results demonstrated support for gender and parabolic age effects but only among Whites. Kinkeeping may have application to the study of White family medical historians, but not Black or Mexican American historians, perhaps because of differences in family structure, salience of T2DM, and/or gender roles.

Family communication in a population at risk for hypertrophic cardiomyopathy.

Encouraging family communication is an integral component of genetic counseling; therefore, we sought to identify factors impacting communication to family members at risk for Hypertrophic Cardiomyopathy (HCM). Participants (N = 383) completed an online survey assessing: 1) demographics (gender, genetic test results, HCM family history, and disease severity); 2) illness representations; 3) family functioning and cohesiveness; 4) coping styles; 5) comprehension of HCM autosomal dominant inheritance; and 6) communication of HCM risk information to at-risk relatives. Participants were a national sample of individuals with HCM, recruited through the Hypertrophic Cardiomyopathy Association. Data from 183 participants were analyzed using a logistic regression analysis, with family communication as a dichotomous dependent variable. We found that female gender and higher comprehension of autosomal dominant inheritance were significant predictors of participants' communication of HCM risk information to all their siblings and children. Our results suggest that utilizing interventions that promote patient comprehension (e.g., a teaching-focused model of genetic counseling) are important and may positively impact family communication within families with HCM.

Anticipated motivation for genetic testing among smokers, nonsmokers, and former smokers: an exploratory qualitative study of decision making.

OBJECTIVES: This qualitative study explores the public's interest in genetic testing related to cigarette smoking, comparing the public's motivations with researchers' intentions for this technology. METHODS: Adult nonsmokers (n=463), former smokers (n=163), and current smokers (n=129) completed an online survey. Within a hypothetical scenario, respondents decided whether they desired genetic testing related to smoking and explained their decision making. A non-parametric Kruskal-Wallis test was used to compare the interest in genetic testing by smoking history group. Inductive content analysis was used to investigate respondents' explanations for their testing decisions. RESULTS: Most nonsmokers (64%) and former smokers (58%) did not want genetic testing. While most current daily smokers were interested in testing (56%), most current occasional smokers were not (52%). Respondents' decision-making explanations were categorized into 3 major themes: Causality, Relevancy and Utility (e.g. personal benefits or harms). The use of causality, relevancy and utility explanations varied by smoking history. Notable perceived benefits of testing included recreation and altruism. Notable perceived harms included fear of fatalistic thoughts and concern about genetic discrimination. CONCLUSIONS: Interest in genetic testing was highest among current daily smokers, despite potential utility in other groups. Although respondents' motivations for testing paralleled researchers' intentions of tailoring smoking cessation therapies and increasing motivation to quit or abstain, respondents also raised alternative motivations and fears that healthcare providers would need to address.

Quality of life and autonomy in emerging adults with early-onset neuromuscular disorders.

Emerging adulthood is an important period in the development of one's identity and autonomy. The ways in which identity and autonomy are viewed by emerging adults and how they impact quality of life (QoL) in individuals with early-onset neuromuscular conditions is not yet known. This study focused on understanding and exploring relationships between self-perceptions of emerging adulthood, autonomy, and QoL. Five previously validated measures were incorporated into an online survey and distributed to young adults with early-onset neuromuscular conditions and unaffected controls. Topics explored included individuals' views regarding their overall QoL, disease-specific QoL, components of emerging adulthood, and autonomy. We found that a sense of higher disease impact was associated with a lower Overall General QoL. Additionally, perceptions of key autonomy factors "negativity" and "instability" were uniquely associated with Overall General QoL in the case group as compared to controls, whereas "attitudinal autonomy" (attaining the ability to plan and follow through with goals) was important to this age group regardless of health status. The specific factors of emerging adulthood and autonomy that were significantly correlated with Overall General QoL can be used for developing targeted counseling and interventions to improve QoL for individuals and their families.

The relationship between stress, dietary restraint, and food preferences in women.

The relationship between stress, restraint, and eating has been studied using various methods, including retrospective self-reports of stress and eating that are open to inaccuracies. Additionally, laboratory research has not systematically varied the fat content and sweetness of food items to assess how stress relates to specific food preferences. In this study of 40 women we examined the role of restraint and experimentally induced stress on the amount of sweet, salty, high-fat, and low-fat food consumed. High-restraint women ate more high-fat food than did low-restraint women, regardless of stress level. High-stressed women preferred sweet, high-fat food more than did low-stressed women, whereas low-stressed women ate more low-fat than high-fat food. There was no interaction between restraint and stress level. Social influence effects of small-group testing may have increased the ego-threat of the stressor or disinhibited high-restraint women in both stress groups. Future laboratory research is needed to assess the role of the presence of others in both stress induction and eating behaviors.

The Perennial Debate: Nature, Nurture, or Choice? Black and White Americans' Explanations for Individual Differences.

This paper examines three common explanations for human characteristics: genes, the environment, and choice. Based on data from a representative sample of White and Black Americans, respondents indicated how much they believed each factor influenced individual differences in athleticism, nurturance, drive, math ability, violence, intelligence, and sexual orientation. Results show that across traits: 1) Black respondents generally favor choice and reject genetic explanations, whereas White respondents indicate less causal consistency; 2) although a sizeable subset of respondents endorse just one factor, most report multiple factors as at least partly influential; and 3) among White respondents greater endorsement of genetic explanations is associated with less acceptance of choice and the environment, although among Black respondents a negative relationship holds only between genes and choice. The social relevance of these findings is discussed within the context of the attribution, essentialism and lay theory literature. The results underscore the need to consider more complex and nuanced issues than are implied by the simplistic, unidimensional character of the nature/nurture and determinism/free will debates - perennial controversies that have significance in the current genomic era.

Beliefs about the etiology of homosexuality and about the ramifications of discovering its possible genetic origin.

Homosexuality is viewed by many as a social problem. As such, there is a keen interest in elucidating the origins of homosexuality among many scholars, from anthropologists to zoologists, from psychologists to theologians. Research has shown that those who believe sexual orientation is inborn are more likely to have tolerant attitudes toward gay men and lesbians, whereas those who believe it is a choice have less tolerant attitudes. The current qualitative study used in-depth, open-ended telephone interviews with 42 White and 44 Black Americans to gain insight into the public's beliefs about the possible genetic origins of homosexuality. Along with etiological beliefs (and the sources of information used to develop these beliefs), we asked respondents to describe the benefits and dangers of scientists discovering the possible genetic basis for homosexuality. We found that although limited understanding and biased perspectives likely led to simplistic reasoning concerning the origins and genetic basis of homosexuality, many individuals appreciated the complex and interactive etiological perspectives. These interactive perspectives often included recognition of some type of inherent aspect, such as a genetic factor(s), that served as an underlying predisposition that would be manifested after being influenced by other factors such as choice or environmental exposures. We also found that beliefs in a genetic basis for homosexuality could be used to support very diverse opinions including those in accordance with negative eugenic agendas.

Applications and implications of advances in human genetics: perspectives from a group of Black Americans.

OBJECTIVES: We explored the opinions of 40 Black Americans regarding: (1) what they thought most Blacks and Whites believe about genetic causes for perceived race differences in human traits, and (2) the impact of genetic science on them, their families, and Black people. METHODS: We conducted in-depth telephone interviews with 40 self-identified Black men and women. Transcripts of the interviews were recorded and examined for common themes. RESULTS: The majority of our respondents felt that most Whites, unlike most Blacks, attribute differences between these groups to genetic factors. Many in our sample felt that genetic advances may provide benefits in the area of health care, but many also recognized potential harm. CONCLUSIONS: Our results provide a glimpse as to what some Blacks believe about genetic science in the context of racial issues.

White Americans' Genetic Lay Theories of Race Differences and Sexual Orientation: Their Relationship with Prejudice toward Blacks, and Gay Men and Lesbians.

This study examined the relationship between White Americans' genetic explanations, conceptualized as genetic lay theories, for perceived racial differences and for sexual orientation, and attitudes toward Blacks, and gay men and lesbians, respectively. Considering contrasting public discourse surrounding race and sexual orientation, we predicted that genetic lay theories would be associated with greater prejudice toward Blacks, but less prejudice toward gay men and lesbians. The findings, based on a representative sample of 600 White Americans, were consistent with expectations. Results are discussed in relation to the literature on essentialism and implicit theories of the malleability of traits. The present research broadens our view of lay theories by showing how they support either prejudice or tolerance, depending on the target group.

Exploring the public understanding of basic genetic concepts.

It is predicted that the rapid acquisition of new genetic knowledge and related applications during the next decade will have significant implications for virtually all members of society. Currently, most people get exposed to information about genes and genetics only through stories publicized in the media. We sought to understand how individuals in the general population used and understood the concepts of "genetics" and "genes." During in-depth one-on-one telephone interviews with adults in the United States, we asked questions exploring their basic understanding of these terms, as well as their belief as to the location of genes in the human body. A wide range of responses was received. Despite conversational familiarity with genetic terminology, many noted frustration or were hesitant when trying to answer these questions. In addition, some responses reflected a lack of understanding about basic genetic science that may have significant implications for broader public education measures in genetic literacy, genetic counseling, public health practices, and even routine health care.