Decision-making and patient experiences with embryo selection during in vitro fertilization often include genetic testing options. The purpose of this study was to gain insight about the experiences and perspectives of women using in vitro fertilization and genetic technologies. Interviews (n = 37) were conducted among female patients who had undergone in vitro fertilization, underwent expanded carrier screening, and were offered pre-implantation genetic testing for aneuploidy between July 2016 and July 2017. The interviews were transcribed and a content analysis was conducted on the transcripts. Categories that emerged from the data analysis included unexpected outcomes, uncertainty, unanticipated emotional consequences, too much emphasis on the woman’s contributions and questions about embryo viability. Patient experiences with genetic technologies during in vitro fertilization played a significant role within these results. The emotional and psychological impacts of infertility during in vitro fertilization were the primary concerns discussed by participants. Future research is needed to identify ways to help manage unexpected outcomes and continuous uncertainty, including the increasing use of genetic technologies, to not add to the psychological burden of infertility. There is a need to explore more support options or counseling services for patients struggling with infertility during in vitro fertilization treatment.

Obtaining informed consent for bloodspot research from newborn screening is particularly challenging due to the hectic environment of the postnatal period and the relatively abstract nature of future, unspecified research on the biospecimens. A randomized controlled trial was conducted in three Michigan hospitals to compare two different consent processes (video and interactive tablet “app”) with standard brochure-based consent in the Michigan BioTrust for Health. Results indicated higher knowledge scores for the video and app groups as well as significantly higher scores on satisfaction, amount of information, and clarity with the information provided. More research is needed to find the right amount of information for informed decision-making, and additional feasibility studies are needed to assess implementation strategies.

The characteristics of a person's health status are often guided by how they live, grow, learn, their genetics, as well as their access to health care. Yet, all too often, studies examining the relationship between social determinants of health (behavioral, sociocultural, and physical environmental factors), the role of demographics, and health outcomes poorly represent these relationships, leading to misinterpretations, limited study reproducibility, and datasets with limited representativeness and secondary research use capacity. This is a profound hurdle in what questions can or cannot be rigorously studied about COVID‐19. In practice, gene–environment interactions studies have paved the way for including these factors into research. Similarly, our understanding of social determinants of health continues to expand with diverse data collection modalities as health systems, patients, and community health engagement aim to fill the knowledge gaps toward promoting health and wellness. Here, a conceptual framework is proposed, adapted from the population health framework, socioecological model, and causal modeling in gene–environment interaction studies to integrate the core constructs from each domain with practical considerations needed for multidisciplinary science.

Objective: The purpose of this study was to explore individuals' beliefs, values, and experiences surrounding stillbirth evaluation decisions. Design: Qualitative research. Setting: University of Utah Health. Population: Parents who experienced a stillbirth in the past 5 years ( n = 19) were interviewed about their experiences and decision to consent to or decline stillbirth evaluations, such as autopsy, placental histopathology, or genetic testing. Methods: Qualitative content analysis. Main Outcome Measures: Barriers and facilitators to parentsstillbirth postmortem decision‐making. Results: Participants communicated several facilitators and barriers that contributed to their stillbirth evaluation decision. Reasons for consenting to evaluations were belief in science, background in medicine, altruism, to inform future pregnancies, thinking about preventing another stillbirth, and how patients viewed the care of their stillborn by the medical team. Reasons for declining evaluations were receiving a diagnosis prior to being offered a postmortem evaluation, intent to avoid causing further harm to the baby, interest to spend more time with their baby, and cost of the evaluation. Conclusion: Stillbirth is one of the most difficult experiences of a parent. Diagnostic and emotional barriers create further challenges to decision‐making for stillbirth postmortem evaluations. Parents often rely on inadequate information and personal values and beliefs during this time‐sensitive decision process. Decision support for stillbirth evaluations and training for medical providers could benefit parents, may increase stillbirth evaluation uptake, and potentially prevent decisional regret. Funding: Research reported in this publication was supported by the Utah Centre for Excellence in ELSI Research (UCEER).