Patients' perspectives on prenatal screening results that suggest maternal cancer: A qualitative analysis.

OBJECTIVE: To explore patient perspectives after receiving non-invasive prenatal testing (NIPT) results that suggest maternal cancer. METHODS: Individuals who received non-reportable or discordant NIPT results during pregnancy and enrolled in a study were interviewed prior to and after receiving the outcome of their clinical evaluation for cancer. Interviews were independently coded by two researchers and analyzed thematically. RESULTS: Forty-nine participants were included. Three themes were identified: 1) limited pre-test awareness of maternal incidental findings caused considerable confusion for participants, whose initial concerns focused on their babies; 2) providers' communication influenced how participants perceived their risk of cancer and the need to be evaluated; and 3) participants perceived value in receiving maternal incidental findings from NIPT despite any stress it caused during their pregnancy. CONCLUSION: Participants viewed the ability to detect occult malignancy as an added benefit of NIPT and felt strongly that these results should be disclosed. Obstetric providers need to be aware of maternal incidental findings from NIPT, inform pregnant people of the potential to receive these results during pre-test counseling, and provide accurate and objective information during post-test counseling. CLINICAL TRIAL REGISTRATION: Incidental Detection of Maternal Neoplasia Through Non-Invasive Cell-Free DNA Analysis (IDENTIFY), a Natural History Study, NCT4049604.

Genomic tools for health: Secondary findings as findings to be shared.

PURPOSE: Whether and how to disclose secondary finding (SF) information to children is ethically debated. Some argue that genetic testing of minors should be limited to preserve the child's future autonomy. Others suggest that disclosure of SFs can occur if it is in the best interests of the child. However, the ways that parents conceptualize and weigh their child's future autonomy against the interests of their child and other family members are unknown. METHODS: To explore how parents understand SF disclosure in the context of their child and other family members' lives, we conducted semistructured interviews with 30 families (40 parents in total). All parents had children who were enrolled in a genetic sequencing protocol that returned results by default. RESULTS: We found that parents did not routinely conceptualize SFs as distinctive health information. Rather parents saw this information as part of their child's overall health. To make decisions about disclosure, parents weighed their child's ability to understand the SF information and their other family member's need to know. CONCLUSION: Because most families desired SF information, we argue that disclosure of SF be reconceptualized to reflect the lived experiences of those who may receive this information.

"Who needs an app? Fertility patients' use of a novel mobile health app".

Objective: The number of couples experiencing infertility treatment has increased, as has the number of women and men experiencing infertility treatment-related stress and anxiety. Therefore, there is a need to provide information and support to both men and women facing fertility concerns. To achieve this goal, we designed a mhealth app, Infotility, that provided men and women with tailored medical, psychosocial, lifestyle, and legal information. Methods: This study specifically examined how fertility factors (e.g. time in infertility treatment, parity), socio-demographic characteristics (e.g. gender, education, immigrant status), and mental health characteristics (e.g. stress, depression, anxiety, fertility-related quality of life) were related to male and female fertility patients' patterns of use of the Infotility app. Results: Overall, the lifestyle section of the app was the most highly used section by both men and women. In addition, women without children and highly educated women were more likely to use Infotility. No demographic, mental health or fertility characteristics were significantly associated with app use for men. Conclusion: This study shows the feasibility of a mhealth app to address the psychosocial and informational needs of fertility patients.

The ethics of encouraging employees to get the COVID-19 vaccination.

The coronavirus pandemic continues to hinder the ability of businesses to operate at full capacity. Vaccination offers a path for employees to return to work, and for businesses to resume full capacity, while protecting themselves, their fellow workers, and customers. Many employers reluctant to mandate vaccination for their employees are considering other ways to increase employee vaccination rates. Because much has been written about the ethics of vaccine mandates, we examine a related and less discussed topic: the ethics of encouragement strategies aimed at overcoming vaccine reluctance (which can be due to resistance, hesitance, misinformation, or inertia) to facilitate voluntary employee vaccination. While employment-based vaccine encouragement may raise privacy and autonomy concerns, and though some employers might hesitate to encourage employees to get vaccinated, our analysis suggests ethically acceptable ways to inform, encourage, strongly encourage, incentivize, and even subtly pressure employees to get vaccinated.

An mHealth App to Support Fertility Patients Navigating the World of Infertility (Infotility): Development and Usability Study.

BACKGROUND: The experience of infertility and its treatment engenders considerable stress and is often described as an emotional rollercoaster. A mobile health (mHealth) app may be a novel solution to address the psychoeducational and psychosocial support needs of fertility patients because of its potential to reduce stress and increase patient empowerment. There are a few fertility-related apps that provide information and support to both men and women undergoing fertility treatment; however, none have documented their development and evaluation process. OBJECTIVE: This study aims to describe the development and evaluation process of a bilingual mHealth app, Infotility, designed to meet the psychoeducational and psychosocial support needs of men and women undergoing fertility treatment. METHODS: To develop the Infotility app, we adhered to the Medical Research Council guidelines for the development and evaluation of complex interventions. First, we conducted literature reviews and needs assessment surveys of fertility patients and health care providers who informed the content and design of the app. Second, we tested the intervention with a small group of end users who provided feedback on the design and appropriateness of the app's content. Third, we evaluated the uptake and usability of the app using a pre-post study design. Finally, we updated the app's content based on participants' feedback and searched for partners to disseminate the app to the broader public. RESULTS: This study is the first to describe the development and evaluation process of an mHealth app for men and women undergoing fertility treatment. The app met its goal in providing fertility patients with a clinician-approved, portable resource for reliable information about medical and psychosocial aspects of infertility and its treatments and a confidential peer support forum monitored by trained peer supporters. Participants rated the engagement, functionality, information, and esthetics of the app positively, with an overall app quality mean score of 3.75 (SD 0.53) and a star rating of 3.43 (SD 0.75), with a total possible score and star rating of 5.00. CONCLUSIONS: By documenting the systematic development and evaluation of the mHealth app for men and women undergoing fertility treatment, this paper can facilitate the replication of the study intervention and the development of similar mHealth apps.

Cultural health capital and the stratification of reproduction in Czech and Spanish egg donation markets.

This article explores the ways that fertility clinics in the Czech Republic and Spain attract international fertility clients for fertility treatment involving egg donation. I draw upon a content analysis of 18 fertility clinics' advertising materials and 31 in-depth interviews with fertility professionals in the Czech Republic and Spain, and Canadian fertility travellers to show how clinics use cultural health capital (CHC) to persist as popular destination sites for fertility travellers. I argue that the use of evidence-based medicine and patient-centred care combined with bioracial discourses are strategies by which clinics create a culture of fertility care that is legible to white, middle-class, hetero travellers. My interviews with fertility patients who travelled to these sites show the ways in which CHC is interactional-I document how fertility travellers desire these specific practices that are both created for and marketed to them. By expanding the definition of CHC to show how fertility clinics market and fertility travellers expect a particular culture of fertility medicine, I elucidate the interactions between clinics and professionals that reinforce ideals of white motherhood and the stratification of reproduction.

Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves.

PURPOSE: Proposals to return medically actionable secondary genetic findings (SFs) in the clinical and research settings have generated controversy regarding whether to solicit individuals' preferences about their "right not to know" genetic information. This study contributes to the debate by surveying research participants who have actively decided whether to accept or refuse SFs. METHODS: Participants were drawn from a large National Institutes of Health (NIH) environmental health study. Participants who had accepted SFs (n = 148) or refused SFs (n = 83) were given more detailed information about the types of SFs researchers could return and were given an opportunity to revise their original decision. RESULTS: Forty-one of 83 initial refusers (49.4%) opted to receive SFs following the informational intervention. Nearly 75% of these "reversible refusers" thought they had originally accepted SFs. The 50.6% of initial refusers who continued to refuse ("persistent refusers") demonstrated high levels of understanding of which SFs would be returned postintervention. The most prominent reason for refusing was concern about becoming worried or sad (43.8%). CONCLUSION: This study demonstrates the need for a more robust informed consent process when soliciting research participants' preferences about receiving SFs. We also suggest that our data support implementing a default practice of returning SFs without actively soliciting preferences.

"I would want to pay her": Challenging altruistic egg exchanges in Canada through moral patchworks.

Studies surrounding egg donation often occur within existing legal marketplaces showing how language of altruism and gift is employed to uphold gendered standards of femininity and morality. This article examines how women negotiate those gendered and moral standards under the Canadian Assisted Human Reproduction Act (AHRA), which prohibited the market exchange of eggs through the criminalization of paid egg donation. Through 71 in-depth semi-structured interviews with health care professionals (n = 51) and egg donation recipients (n = 20), I argue that participants in these exchanges use a patchwork of moral framings to question the ethicality of the act and the gendered links between altruism, morality and femininity. These market participants employ moral patchworks consisting of subverting, circumventing and rejecting the legally defined ethical practice of donation. By explicitly discussing payment and gifts as moral egg donation exchanges, recipients and fertility professionals suggest that egg donors' reproductive labor should be monetarily recognized. This article considers the ethical implications of these moral patchworks for understanding how gender is reproduced and undone in market exchanges.

Efficacy as safety: Dominant cultural assumptions and the assessment of contraceptive risk.

To reduce rates of unintended pregnancy, medical and public health associations endorse a contraceptive counseling model that ranks birth control methods by failure rate. This tiered model outlines all forms of birth control but recommends long-acting reversible contraceptives (LARC) to eliminate user error and increase continuation. Our critical discourse analysis of gynecology textbooks and medical recommendations examines how gendered and neoliberal ideas influence risk assessments underlying the tiered contraceptive counseling model. Specifically, we explore how embodied, lifestyle, and medical risks are constructed to prioritize contraceptive failure over adverse side effects and reproductive autonomy. We find that the tiered model's focus on contraceptive failure is justified by a discourse that speciously conflates distinct characteristics of pharmaceuticals: efficacy (ability to produce intended effect) and safety (lack of unintended adverse outcomes). Efficacy discourse, which filters all logic through the lens of intended effect, magnifies lifestyle and embodied risks over medical risks by constructing two biased risk assessments. The first risk assessment defines ovulation, menstruation, and pregnancy as hazardous (i.e., embodied risk); the second insinuates that cisgender women who do not engage in contraceptive self-management are burdensome to society (i.e., lifestyle risk). Combined, these assessments downplay side effects (i.e., medical risks), suggesting that LARC and other pharma-contraceptives are worth the risk to protect cisgender women from their fertile bodies and to guard society against unintended pregnancy. Through this process, ranking birth control methods by failure rates rather than by side effects or reproductive autonomy becomes logical as efficacy is equated with safety for cisgender women and society. Our analysis reveals how technoscientific solutions are promoted to address social problems, and how informed contraceptive choice is diminished when pharma-contraceptives are framed as the most logical option without cogent descriptions of their associated risks.

Predictors of infertility-related concerns in a Canadian survey of men and women seeking fertility treatment.

OBJECTIVE: To examine if and how factors associated with infertility-related concerns and opportunity to discuss concerns differ between male and female fertility patients. METHODS: A cross-sectional survey of 313 female and 254 male patients recruited from Canadian fertility clinics. An online survey asked about sociodemographic characteristics, psychological distress, the severity of psychosocial concerns on a scale of 0 (not concerned) to 5 (very concerned) related to fertility treatment, and their opportunity and desire to discuss concerns with healthcare providers (HCPs). RESULTS: For women, higher stress, educational attainment and being childless were associated with higher concern (F(6, 287) = 14.73, p < .001). For men, higher stress, being religious and longer treatment duration were associated with higher concern (F(8, 222) = 9.87, p < .001). No significant difference existed between men's and women's average concern scores (t(558) = -1.62, p = .11) or opportunity to discuss concerns (t(149) = 0.28, p = .78). CONCLUSION: Our results indicate an unmet need and desire for support among subgroups of patients who were concerned about psychosocial issues related to infertility, but did not have the opportunity to discuss these issues with HCPs. PRACTICE IMPLICATIONS: There is a need to tailor resources to address the concerns of male and female fertility patients from diverse sociodemographic backgrounds and with different fertility histories.

Searching the Internet for Infertility Information: A Survey of Patient Needs and Preferences.

BACKGROUND: Given the complexity of infertility diagnoses and treatments and the convenience of the internet for finding health-related information, people undergoing infertility treatments often use Web-based resources to obtain infertility information and support. However, little is known about the types of information and support resources infertility patients search for on the internet and whether these resources meet their needs. OBJECTIVE: The aims of this study were to (1) examine what individual factors, namely, demographic characteristics and distress, are associated with searching the internet for different types of infertility-related information and support resources and (2) determine whether Web-based resources meet the needs of patients. METHODS: Men and women seeking infertility care responded to a survey assessing use of Web-based resources for accessing infertility-related information and support. The survey further assessed satisfaction with Web-based resources as well as perceived stress and depressive symptomatology. RESULTS: A total of 567 participants, including 254 men and 313 women, completed the survey. Most participants (490/558, 87.8%) had searched the internet for infertility information and support. Searchers were more likely to be women (P<.001), highly educated (P=.04), long-term patients (P=.03), and more distressed (P=.04). Causes of infertility, treatment options, and scientific literature about infertility were the three most frequently searched topics, whereas ways to discuss treatment with family and friends as well as surrogacy and ways to find peer support were the three least searched topics. Of those who searched the internet, 70.9% (346/488) indicated that their needs were met by Web-based information, whereas 29.1% (142/488) said that their needs were not met. Having unmet needs was related to greater levels of perceived stress (P=.005) and depressive symptomatology (P=.03). CONCLUSIONS: This study provides evidence for the important role of the internet in accessing infertility information and support and for the ability of Web-based resources to meet patients' needs. However, although distressed patients reported particularly high rates of searching, their needs were not always met, suggesting that they may benefit from alternative sources of information and support or guidance from health care providers when searching the internet.

Constructing contentious and noncontentious facts: How gynecology textbooks create certainty around pharma-contraceptive safety.

Using critical discourse analysis, we examine how seven popular gynecology textbooks use sociolinguistic devices to describe the health effects of pharma-contraception (intrauterine and hormonal methods). Though previous studies have noted that textbooks generally use neutral language, we find that gynecology textbooks differentially deployed linguistic devices, framing pharma-contraceptive benefits as certain and risks as doubtful. These discursive strategies transform pharma-contraceptive safety into fact. We expand on Latour and Woolgar's concept of noncontentious facts by showing how some facts that are taken for granted by the medical community still require discursive fortification to counter potential negative accusations from outside the profession. We call these contentious facts. Our findings suggest that a pro-pharma orientation exists in gynecology textbooks, which may influence physicians' understanding of pharmaceutical safety. As such, these texts may affect medical practice by normalizing pharma-contraceptives without full considerations of their risks.

Demarcating the dirty work: Canadian Fertility professionals' use of boundary-work in contentious egg donation.

The potential medical risks to egg donors, in addition to the concern over the commodification of life, has led to debates surrounding the ethics of paying donors. In Canada, payment for eggs is prohibited by law; however, what is considered payment is contentious and has yet to be defined. The lack of legislative clarity coupled with increased ethical concerns over paying a donor has shifted egg donation from a medically-controlled procedure to a legal and social endeavor involving multiple professionals. Through semi-structured interviews with 52 medical and non-medical fertility practitioners, I show how medical practitioners use boundary-work to remove their practice from the ethical and legal debates surrounding egg donation, the "dirty work". I examine how the medical profession relies on discourses of "practicing science" to present their work as favorable and removed from current debates and potential legal ramifications. In showing how medical practitioners rely on boundary-work to distinguish their work from non-scientific and non-medical activities, I expand Gieryn's original conceptualization of boundary-work to demonstrate how medical practitioners can selectively draw on their practice of science to remove their work from ethically and legally contentious issues, the dirty work.

Masculinity, Mental Health, and Desire for Social Support Among Male Cancer and Infertility Patients.

By surveying men who are currently infertile ( N = 251) and men who are potentially infertile (i.e., men with cancer; N = 195), the mental health consequences of reproductive masculinity, or the cultural assumption that men are virile and should be fathers, were investigated. There was no difference in depression levels between these two groups when controlling for demographic variables, suggesting that both groups of men have similar mental health needs. Since gendered notions of masculinity also suggest that men do not want to discuss their fertility health, their desire for online fertility-related social support was assessed. These findings suggest that most men do want to talk to others about fertility, which indicates that there is a need for more fertility-related social support. This research challenges some conceptions regarding masculinity, as men revealed an interest in accessing online social support related to fertility.

Evidence for the use of complementary and alternative medicines during fertility treatment: a scoping review.

BACKGROUND: Complementary and alternative medicines (CAM) are sometimes used by individuals who desire to improve the outcomes of their fertility treatment and/or mental health during fertility treatment. However, there is little comprehensive information available that analyzes various CAM methods across treatment outcomes and includes information that is published in languages other than English. METHOD: This scoping review examines the evidence for 12 different CAM methods used to improve female and male fertility outcomes as well as their association with improving mental health outcomes during fertility treatment. Using predefined key words, online medical databases were searched for articles (n = 270). After exclusion criteria were applied, 148 articles were analyzed in terms of their level of evidence and the potential for methodological and author bias. RESULTS: Surveying the literature on a range of techniques, this scoping review finds a lack of high quality evidence that complementary and alternative medicine (CAM) improves fertility or mental health outcomes for men or women. Acupuncture has the highest level of evidence for its use in improving male and female fertility outcomes although this evidence is inconclusive. CONCLUSION: Overall, the quality of the evidence across CAM methods was poor not only because of the use of research designs that do not yield conclusive results, but also because results were contradictory. There is a need for more research using strong methods such as randomized controlled trials to determine the effectiveness of CAM in relation to fertility treatment, and to help physicians and patients make evidence-based decisions about CAM use during fertility treatment.