Dataset Information

Parents' decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project.

ABSTRACT:

Purpose

Most professional guidelines recommend against genetic screening for adult-onset only (AO) conditions until adulthood, yet others argue that there may be benefit to disclosing such results. We explored parents' decision-making on this issue in the BabySeq Project, a clinical trial of newborn genomic sequencing.

Methods

We conducted interviews with parents (N = 24) who were given the option to receive actionable AO results for their children. Interviews explored parents' motivations to receive and reasons to decline AO genetic disease risk information, their decision-making process, and their suggestions for supporting parents in making this decision.

Results

Parents noted several motivations to receive and reasons to decline AO results. Most commonly, parents cited early intervention/surveillance (n = 11), implications for family health (n = 7), and the ability to prepare (n = 6) as motivations to receive these results. The most common reasons to decline were protection of the child's future autonomy (n = 4), negative effect on parenting (n = 3), and anxiety about future disease (n = 3). Parents identified a number of ways to support parents in making this decision.

Conclusion

Results show considerations to better support parental decision-making that aligns with their values when offering AO genetic information because it is more commonly integrated into pediatric clinical care.

SUBMITTER: Pereira S

PROVIDER: S-EPMC9992280 | biostudies-literature | 2023 Mar

REPOSITORIES: biostudies-literature

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Publications

Parents' decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project.

Pereira Stacey S Gutierrez Amanda M AM Robinson Jill Oliver JO Christensen Kurt D KD Genetti Casie A CA Blout Zawatsky Carrie L CL Hsu Rebecca L RL Zettler Bethany B Uveges Melissa Kurtz MK Parad Richard B RB Beggs Alan H AH Holm Ingrid A IA Green Robert C RC McGuire Amy L AL

Genetics in medicine : official journal of the American College of Medical Genetics 20221220 3

<h4>Purpose</h4>Most professional guidelines recommend against genetic screening for adult-onset only (AO) conditions until adulthood, yet others argue that there may be benefit to disclosing such results. We explored parents' decision-making on this issue in the BabySeq Project, a clinical trial of newborn genomic sequencing.<h4>Methods</h4>We conducted interviews with parents (N = 24) who were given the option to receive actionable AO results for their children. Interviews explored parents' mo ...[more]

PMID: 36549595

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Project description:OBJECTIVES:As shared decision making (SDM) has received increased attention as a method to improve the patient-centeredness of emergency department (ED) care, we sought to determine patients' desired level of involvement in medical decisions and their perceptions of potential barriers and facilitators to SDM in the ED. METHODS:We surveyed a cross-sectional sample of adult ED patients at three academic medical centers across the United States. The survey included 32 items regarding patient involvement in medical decisions including a modified Control Preference Scale and questions about barriers and facilitators to SDM in the ED. Items were developed and refined based on prior literature and qualitative interviews with ED patients. Research assistants administered the survey in person. RESULTS:Of 797 patients approached, 661 (83%) agreed to participate. Participants were 52% female, 45% white, and 30% Hispanic. The majority of respondents (85%-92%, depending on decision type) expressed a desire for some degree of involvement in decision making in the ED, while 8% to 15% preferred to leave decision making to their physician alone. Ninety-eight percent wanted to be involved with decisions when "something serious is going on." The majority of patients (94%) indicated that self-efficacy was not a barrier to SDM in the ED. However, most patients (55%) reported a tendency to defer to the physician's decision making during an ED visit, with about half reporting they would wait for a physician to ask them to be involved. CONCLUSION:We found that the majority of ED patients in our large, diverse sample wanted to be involved in medical decisions, especially in the case of a "serious" medical problem, and felt that they had the ability to do so. Nevertheless, many patients were unlikely to actively seek involvement and defaulted to allowing the physician to make decisions during the ED visit. After fully explaining the consequences of a decision, clinicians should make an effort to explicitly ascertain patients' desired level of involvement in decision making.

Project description:IntroductionEnhancing human papillomavirus (HPV) vaccine uptake rates to protect women's health is an important public health issue worldwide. China has taken a series of measures in recent years to promote HPV vaccination among school-aged girls, but the vaccine uptake rate remains low. Investigating the factors influencing vaccination-related decision-making of adolescent girls' parents is key to solving the problem. This study aimed to examine the influence of sociocultural-psychological predictors, including exposure to HPV-related stories (positive/negative), affective reactions (pride/regret), injunctive norms on the Internet and perceived moral obligation, on parents' HPV vaccination-related decision-making for girls aged 13-15 years in mainland China.MethodsA cross-sectional online survey using quota sampling was conducted in February 2022. Four hundred and five valid and qualified questionnaires were obtained. Partial least squares structural equation modeling was performed by SmartPLS 3 (i) to evaluate the reliability and validity of the measurement models of 11 constructs, and (ii) to test the effect relationships of the sociocultural-psychological predictors on parents' intention to vaccinate their daughters.ResultsThe study findings showed that parental decision-making regarding HPV vaccination was influenced by sociocultural and psychological factors. At the level of individual psychological factors, exposure to positive stories was significantly associated with perceived vaccine effectiveness (β = 0.331, t = 8.448, p < 0.001), which strongly predicted the attitude toward vaccination (β = 0.521, t = 8.133, p < 0.001); anticipated pride had more positive influence on vaccination-related decision-making (β = 0.156, t = 2.176, p < 0.05) than anticipated regret. In terms of social influence, injunctive norms on the Internet had a significantly positive influence on vaccination intention (β = 0.127, t = 2.382, p < 0.05), similar to descriptive norms (β = 0.135, t = 3.358, p < 0.01). Perceived moral obligation at the cultural level was the strongest predictor of parental decision-making regarding HPV vaccination (β = 0.193, t = 2.139, p < 0.05).DiscussionThis study is the first in mainland China to systematically examine the sociocultural-psychological predictors of parents' decision-making to vaccinate their 13-15-year-old daughters against HPV. A new extended TPB model with a sociocultural-psychological approach was developed. This model can support the investigation of factors affecting HPV vaccine uptake rates in the mainland Chinese population and similar populations and help to understand the differences in vaccination-related decision-making between Eastern and Western cultures. Furthermore, the study provided some suggestions for HPV vaccination communication campaigns targeting adolescent girls' parents.

Dataset Information

Parents' decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project.

Purpose

Methods

Results

Conclusion

Publications

Parents' decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project.

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