Women In Quebec Research Articles

Examining recovery and mental health service satisfaction among young immigrant Muslim women with mental distress in Quebec

ObjectiveThe overall aim of this study was to understand the experiences and perspectives of immigrant Muslim women in Quebec living with mental illness, who have recently used formal mental health services such as an accredited therapist, psychologist, or clinician. Specific objectives included (i) eliciting and examining their self-identified barriers and facilitators to recovery; (ii) exploring links between religion and mental health; and (iii) self-reported satisfaction with mental health services received.MethodsWe adopted a qualitative approach, facilitating the prioritization of participant perspectives. This involved semi-structured interviews with 20 women who (i) identified as Muslim; (ii) had used mental health services in the last three years; and (iii) were 18 + years of age. Interviews were transcribed and analyzed using thematic analysis techniques.ResultsThree prominent themes emerged from the analysis. These themes were (i) stigma and misunderstandings in families (especially parents) and sometimes in the ethno-religious community, both acting as barriers to health service utilization and recovery; (ii) frustrating clinical experiences within formal mental health care settings, in particular a perceived lack of cultural and religious competence, which negatively affected service utilization and the development of a therapeutic alliance; and (iii) deeply-held religious beliefs, practices and trust in God imparting a rhythm, purpose and meaning, which were strong facilitators to recovery.Conclusions and implications for practiceThese findings suggest that recovery from mental illness can be advanced by a three-pronged approach in this population. First, anti-stigma mental health literacy interventions could be held in collaboration with Muslim community groups. Second, there is a need for further religious and cultural competence interventions, resources and trainings for mental health professionals working with Muslims. Third, self-care resources should be developed that harness aspects of religious practices that can give structure, meaning, purpose and hope. All this could ultimately foster recovery in this population.

Changes in prenatal cannabis-related diagnosed disorders after the Cannabis Act and the COVID-19 pandemic in Quebec, Canada.

Public health concerns regarding pregnant women's health after the enactment of the Cannabis Act in Canada (CAC) (a law that allowed non-medical cannabis use), and the potential impact of the COVID-19 pandemic, call for a contemporary assessment of these two events. Our study measured associations between the CAC, the COVID-19 pandemic and the monthly prevalence rates of cannabis-, all drug- and alcohol-related diagnosed disorders among pregnant women in the province of Quebec. This was a quasi-experimental design applying an interrupted time-series methodology in the province of Quebec, Canada. The participants were pregnant women aged 15-49 years, between January 2010 and July 2022. Administrative health data from the Québec Integrated Chronic Disease Surveillance System were used to classify pregnant women according to cannabis-, all drug (excluding cannabis)- and alcohol-related disorders. The CAC (October 2018) and the COVID-19 pandemic (April 2020) were evaluated as (1) slope changes and (2) level changes. Cannabis-, all drug (excluding cannabis)- and alcohol-related disorders were measured by total monthly age-standardized monthly prevalence rate of each disorder for pregnant women aged 15-49 years. Before the CAC, the prevalence rate of cannabis-related diagnosed disorders significantly increased each month by 0.5% [95% confidence interval (CI) = 0.3-0.6] in the pregnant population. After the CAC, there were significant increases of 24% (95% CI = 1-53) of cannabis-related diagnosed disorders. No significant changes were observed for all drug (excluding cannabis)- and alcohol-related diagnosed disorders associated with the CAC. A non-significant decrease of 20% (95% CI = -38 to 3) was observed during the COVID-19 pandemic in alcohol-related disorders. The monthly incidence rates of diagnosed cannabis-related disorders in pregnant women in Quebec increased significantly following the enactment of the Cannabis Act in Canada. Diagnoses of all drug (excluding cannabis)- and alcohol-related disorders remained relatively stable.

Non-cardiac birth defects and long-term risk of cardiovascular hospitalisation

BackgroundPatients with heart defects are at risk of developing cardiovascular disease. Our objective was to determine if non-cardiac birth defects are associated with the risk of cardiovascular hospitalisation.MethodsWe conducted a...

Notwithstanding Minority Rights

This comment takes up the question of what considerations ought to shape our understanding of section 33. We do not engage directly with the attributes or failings of the current and limited judicial treatment of section 33. Instead, our focus is on the political ramifications of using section 33 in the current political climate. More specifically, we use Quebec’s Bill 21 as a reference point to highlight some deep issues about how section 33 has been integrated into and shapes constitutional discourse. Our analysis pays critical attention to the unique position of Muslim women in Quebec and is framed from the perspective of intersectional feminist equality thinking. From this grounding, we argue that the current legal treatment of section 33 establishes, contrary to the promises of proponents of the override, no equilibrium between parliamentary and judicial powers. Rather, section 33 unavoidably guarantees that majoritarian politics prevail, irrespective of the minority rights issues at play. Prioritizing majoritarian opinion and interests in this manner, we suggest, threatens great damage to the constitutional democracy we think we all should want. The result is a democratic comity in which critical aspects of substantive equality and participatory rights for the most vulnerable and marginal are negated.

Risk of Cardiovascular Disease in Women With a History of Hyperemesis Gravidarum, With and Without Preeclampsia.

Background Hyperemesis gravidarum is associated with preeclampsia, but it is unclear whether hyperemesis gravidarum is a risk factor for cardiovascular disease. We assessed the long-term risk of cardiovascular disease in women who experienced hyperemesis gravidarum with or without preeclampsia. Methods and Results We analyzed a longitudinal cohort of 1 413 166 pregnant women in Quebec between 1989 and 2021. Women were followed from their first pregnancy up to 3 decades later. We computed hazard ratios (HRs) and 95% CIs for the association of hyperemesis gravidarum, preeclampsia, or both conditions with subsequent risk of cardiovascular hospitalization using Cox regression models adjusted for baseline characteristics. Among 1 413 166 women, 16 288 (1.2%) had hyperemesis gravidarum only, 69 645 (4.9%) preeclampsia only, and 1103 (0.08%) had both conditions. After 32 years of follow-up, cardiovascular disease incidence was 17.7 per 100 women with hyperemesis gravidarum only, 28.2 per 100 women with preeclampsia only, 30.9 per 100 women with both exposures, and 14.0 per 100 women with neither exposure. Compared with no exposure, women with both hyperemesis and preeclampsia had the greatest risk of cardiovascular hospitalization (HR, 3.54 [95% CI, 3.03-4.14]), followed by women with preeclampsia only (HR, 2.58 [95% CI, 2.51-2.64]) and hyperemesis only (HR, 1.46 [95% CI, 1.38-1.54]). Having both hyperemesis gravidarum and preeclampsia was strongly associated with valve disease (HR, 3.38 [95% CI, 1.69-6.75]), heart failure (HR, 3.43 [95% CI, 1.79-6.59]), and cardiomyopathy (HR, 4.17 [95% CI, 1.99-8.76]). Conclusions Hyperemesis gravidarum is associated with the development of cardiovascular disease, whether preeclampsia is present or not.

Indications for childbirth evacuation and obstetric outcomes among Nunavimmiut: A 5-year retrospective medical chart review

Childbirth evacuation, the transfer of Indigenous patients to tertiary centers for high-risk pregnancy care or childbirth, is linked to widening health disparities between Indigenous and non-Indigenous women in Quebec. We examined the indications and outcomes of childbirth evacuation among Nunavimmiut transferred to a single tertiary care center.

Maternal Vitamin D Insufficiency Early in Pregnancy Is Associated with Increased Risk of Preterm Birth in Ethnic Minority Women in Canada

BackgroundMaternal vitamin D insufficiency (plasma 25-hydroxyvitamin D [25(OH)D] <75 nmol/L) may play a role in ethnic disparities in rates of preterm and spontaneous preterm births. ObjectiveWe explored the relation between maternal plasma 25(OH)D concentration in the first trimester (8–14 wk of gestation) and the risk of preterm and spontaneous preterm births (<37 wk of gestation) by ethnicity. MethodsWe designed a case-control study that included 120 cases of preterm birth (<37 wk of gestation) and 360 term controls (≥37 wk of gestation) of singleton pregnancies from the 3D cohort, a multicenter study in 2456 pregnant women in Quebec, Canada. Plasma 25(OH)D was measured by LC–mass spectrometry. We compared the distribution of vitamin D status between cases and controls for 8 ethnic minority subgroups. We explored the association between maternal plasma 25(OH)D concentration and preterm and spontaneous preterm births with the use of splines in logistic regression by ethnicity. ResultsThe distributions of maternal vitamin D status (<50, 50–75, and >75 nmol/L) were different in preterm and spontaneous preterm birth cases compared with controls but only in women of ethnic minority (P-trend = 0.003 and 0.024, respectively). Among ethnic subgroups, sub-Saharan Africans (P-trend = 0.030) and Arab-West Asians (P-trend = 0.045) showed an inverse relation between maternal vitamin D status and the risk of preterm birth. Maternal plasma 25(OH)D concentrations of 30 nmol/L were associated with 4.05 times the risk of preterm birth in the total ethnic minority population (95% CI: 1.16, 14.12; P = 0.028) relative to participants with a concentration of 75 nmol/L. In contrast, there was no such association among nonethnic women (OR: 0.94; 95% CI: 0.48, 1.82; P = 0.85). There was no association when we considered only spontaneous preterm births in the total ethnic minority population (OR: 1.75; 95% CI: 0.39, 7.79; P = 0.46). ConclusionVitamin D insufficiency is associated with an increased risk of preterm birth in ethnic minority women in Canada.

Accessibility of Pelvic Floor Physiotherapy for Treating Urinary Incontinence in Older Women in Quebec: An Online Survey.

This cross-sectional descriptive study describes available pelvic floor physiotherapy (PT) services for older women with urinary incontinence (UI) in Quebec, Canada, and identifies possible affordability barriers. From September to December 2019, Quebec physiotherapists practising pelvic floor PT were invited to complete a survey on their clinical practice and perceptions of the affordability of UI treatment for older women. Eighty-four of the 225 registered pelvic floor physiotherapists (37.3%) filled out the online survey. They worked a median of 32 hours/week in PT, with 15 of those hours (46.9%) in pelvic floor PT and three hours (9.8%) treating UI in older women. Only 13.0% of them offered group treatment, while 84.3% were interested in it. Most of the physiotherapists (92.2%) had met older women in their practice who had reported financial barriers to completing their pelvic floor PT treatment. The accessibility of UI care in Quebec appears hampered by the limited availability of pelvic floor PT treatments, mainly in public settings, and potential financial constraints. Providing pelvic floor PT to groups could constitute a promising avenue to tackle both issues. Future studies should look at ways of implementing this option.

Cocaine and the Long-Term Risk of Cardiovascular Disease in Women

BackgroundCocaine is associated with acute cardiovascular complications, but the long-term cardiovascular risks of cocaine use are poorly understood. We examined the association between cocaine use disorders and long-term cardiovascular morbidity in women. MethodsWe analyzed a longitudinal cohort of 1,296,463 women in Quebec, Canada between 1989 and 2020. The exposure included cocaine use disorders prior to or during pregnancy. The outcome was cardiovascular hospitalization up to 31 years later. We used adjusted Cox regression models to estimate hazard ratios (HR) and 95% confidence intervals (CI) for the association of cocaine use disorders with cardiovascular hospitalization. ResultsThe cohort included 2954 women with cocaine use disorders. Compared with women without an identified cocaine disorder, women with cocaine use disorders had 1.55 times greater risk of future cardiovascular hospitalization during 3 decades of follow-up (95% CI, 1.37-1.75). Cocaine use disorders were strongly associated with inflammatory heart disease (HR 4.82; 95% CI, 2.97-7.83), cardiac arrest (HR 2.93; 95% CI, 1.46-5.88), valve disease (HR 3.09; 95% CI, 2.11-4.51), and arterial embolism (HR 2.22; 95% CI, 1.19-4.14). The association between cocaine use disorder and cardiovascular hospitalization was most marked after 5 to 10 years of follow-up (HR 2.15; 95% CI, 1.70-2.72). ConclusionsWomen with cocaine use disorders have a high risk of cardiovascular hospitalization up to 3 decades later. Substance use reduction and cardiovascular risk surveillance may help reduce the burden of cardiovascular disease in women with cocaine use disorders.

A longitudinal study of women's representations and experiences of pregnancy and childbirth

ObjectiveTo explore women's representations of pregnancy and childbirth and how these representations are constructed and have changed. BackgroundIn the 1980s, many women in Quebec demanded that the birthing process be both demedicalised and humanised, resulting in the legalisation of the midwife profession while expanding their choices over birthing locations within the public health system (e.g., birthing centres, the home, or hospitals). Birth-related technologies were also improving at that time. Nearly 40 years later, we wanted to learn about their perceptions. MethodThis qualitative and contextualised phenomenological study surveyed 25 first-time mothers who had received care from midwives, general practitioners, or obstetricians. Each participant met with the researcher twice during her pregnancy and once after giving birth to engage in narrative conversations, which were analysed from an interdisciplinary viewpoint (socio-anthropology). FindingsParticipant perceptions of pregnancy varied. Some saw it as a state that distorted the body, while others saw it as a long period of struggle with a compulsory step that was also fascinating and/or even happy. Women undergo an incremental process of change before contemplating childbirth, and typically undergo a transitional period when nearing the event itself. They may think of childbirth as joyful and/or painful. Representations are built intersubjectively through influences involving family, the media, and care providers. Stories from their mothers, therefore, created undeniable impressions. ConclusionIn a context heavily influenced by technology, easy pregnancies and/or childbirth events are typically deemed “lucky.” This negatively reinforces both the cultural and intergenerational values transmitted regarding these events.

Ramadan exposure during early pregnancy and risk of stillbirth in Arab women living in Canada.

Data on fasting during Ramadan and the risk of preterm birth and child mortality are conflicting, but the association with stillbirth is unknown. We studied the relationship between Ramadan and the risk of stillbirth for Arab women in Quebec, Canada. We conducted a retrospective cohort study using birth certificates for Arab women in Quebec, Canada, between 1981 and 2017. The exposure was Ramadan in the first and second trimester (1-27weeks of gestation), and the outcome was early (<28weeks) or late (≥28weeks) stillbirth. We used log-binomial regression models to estimate risk ratios (RR) and 95% confidence intervals (CI) for the association between Ramadan and risk of stillbirth. We adjusted models for maternal characteristics and assessed associations by cause of death. The study included 78,349 live births and 274 stillbirths. There were 3.5 stillbirths per 1,000 pregnancies for women exposed to Ramadan between weeks 1-27 of gestation (95% CI 3.0, 4.0), and 3.4 per 1,000 for unexposed women (95% CI 2.8, 4.1). Compared with no exposure, Ramadan between weeks 1-27 was not associated with the risk of early (RR 1.32, 95% CI 0.76, 2.28) or late stillbirth (RR 0.93, 95% CI 0.70, 1.23) in adjusted models. RRs for early stillbirth were 1.40 for Ramadan between weeks 15-21 (95% CI 0.70, 2.80) and 1.38 for Ramadan between weeks 22-27 (95% CI 0.67, 2.84). Relative to no exposure, Ramadan between weeks 15-21 was associated with early stillbirth due to congenital anomaly (RR 3.96; 95% CI 1.35, 11.57) in unadjusted models. There was no association with other causes of stillbirth. There is no evidence that Ramadan is associated with the risk of early or late stillbirth overall. Further research is needed to confirm an association with stillbirth due to congenital anomalies.

Giving Birth to Another Child: Women’s Perceptions of Their Childbirth Experiences in Quebec

Medical interventions during childbirth are on the rise and many women in Quebec emerge from a first childbirth with the desire to live a different, less medicalized subsequent experience. To address how multiparity can affect the ways of giving birth, we conducted 20 in-depth qualitative interviews with multiparas who gave birth to their last child in various birthing environments in the 6 months prior to this study. Using tri-level coding, we inductively analyzed the transcripts, which showed an evolution in the participants' perspectives. A spiral effect seems to be in place: The more women feel at ease with childbirth, the more they seek to establish a context in which they feel even more at ease. However, some women had to go through multiple birth experiences before being able to assert themselves and consider their perspectives regarding their own experiences as legitimate.

« J’avais peur de me faire déporter, mais j’ai demandé de l’aide » : Quand l’immigration par le parrainage se retourne contre les femmes

Cette recherche explore les effets que produisent les lois ayant trait à l’immigration sur le parcours des femmes parrainées. Le parrainage d’un conjoint ou d’une conjointe, qui facilite le regroupement familial des couples dont un membre réside au Québec et l’autre à l’extérieur du Canada, implique des démarches qui encouragent une « incorporation dépendante » (Roca Girona 2009) à la société d’accueil pour la personne parrainée. Des entrevues semi-dirigées menées auprès de dix femmes ayant été parrainées au Québec montrent que le processus est complexe et crée des relations de pouvoir asymétriques, menant parfois à la violence, dans un contexte de triple dépendance: légale, économique et sociale.

Quebec pay equity law in light of feminist theories

Since its entry into force, the Pay Equity Act has mobilized time and resources and continues to do so for all stakeholders in the labor market, including the Quebec administration. Practice, experience and results today make it possible to take a clear look at the progress made which places pay equity in an irreversible movement, but also on the road that remains to be done and the means to take to achieve and maintain pay equity for women in Quebec. Thus, even in unionized circles, among the largest private companies, and even within the Quebec public service, salary adjustments had to be made at the end of the pay equity exercises to tighten this residual salary range between men and women. These are all notable advances that highlight the effectiveness of groundbreaking, genuinely feminist legislation.

Entreprized contentetlesbian multicasting: étude comparative entre la saison 1 et la saison 2 de la série web québécoiseFéminin/Féminin

This article seeks to place the Féminin/Féminin web series (Chloé Robichaud, 2014 and 2018) within the Quebec media ecosystem and to think, through this case study, of the potential of the web as a platform for the dissemination of queer serial fiction written, directed, and produced by women in Quebec. This study examines more specifically the formal and discursive implications in Robichaud’s work between a first season that was produced for the independent community website Lez Spread the Word (LSTW) and a second season that was broadcast on the largest digital broadcasting platform in Quebec – Tou.tv. The visibility of a multiplicity of queer subjectivities certainly made history in Quebec television. However, by paying particular attention to the production budgets of seasons 1 and 2 as well as to their distribution space and by carrying out a comparative analysis of the narrative structures and images of lesbian characters in seasons 1 and 2 through the lens of the Queer Art of Failure (Halberstam), this article gives a better understanding of the programming of this series as “prized content” (Lotz) for season 1 and as “lesbian multicasting” (Himberg) for season 2. The study of this first queer Quebec television fiction makes an inventory of the post-network era in Quebec possible. This era, through its explosion of audiences, would promise more diverse and inclusive television for marginalized identities.

Cannabis use disorder and the future risk of cardiovascular disease in parous women: a longitudinal cohort study

BackgroundCannabis use is increasing in women of reproductive age, but whether cannabis use disorders increase the long-term risk of cardiovascular disease in this population is not known. Cannabis may cause tachycardia, hypertension, cerebral vasoconstriction, and other adverse cardiovascular effects and has been associated with acute myocardial infarction and stroke. Data on the long-term effects of cannabis on the cardiovascular system are more limited. We assessed the relationship between cannabis use disorders early in life and the future risk of cardiovascular disease in women.MethodsWe analyzed a longitudinal cohort of 1,247,035 pregnant women in Quebec, Canada, between 1989 and 2019. The main exposure was current or past history of cannabis use disorders at cohort entry. The main outcome measure included future hospital admission for any cardiovascular disorder during 18,998,986 person years of follow-up. We used Cox proportional hazards regression models adjusted for patient characteristics to compute hazard ratios (HR) and 95% confidence intervals (CI) for the association of cannabis use disorder with the later risk of cardiovascular hospitalization.ResultsWomen with cannabis use disorders had a higher incidence of cardiovascular hospitalization than unexposed women (58.4 vs. 33.6 per 10,000 person years). Cannabis use disorder was associated with 1.48 times the risk of cardiovascular hospitalization (95% CI 1.27–1.72), compared with no cannabis use disorder. The association was greater for cannabis with concomitant use of other substances (HR 1.84, 95% CI 1.53–2.21) than for cannabis alone (HR 1.30, 95% CI 0.99–1.72). Cannabis use disorder was strongly associated with hemorrhagic stroke, even with adjustment for other substance use (HR 2.08, CI 1.07–4.05).ConclusionsCannabis use disorders may increase the long-term risk of cardiovascular disease in women, particularly hemorrhagic stroke. However, some of the excess risk may be due to concomitant use of other substances.

Stillbirth Among Arab Women in Canada, 1981-2015.

The Arabic-speaking population is increasing in Europe and North America. Evidence suggests that Arab migrants have a greater risk of adverse birth outcomes than nonmigrants, but the risk of stillbirth is largely understudied. We examined inequality in stillbirth rates between Arab women and the French and English majority of women in Quebec, Canada. We conducted a retrospective study of all births in Quebec from 1981 through 2015. We computed stillbirth rates by period and cause of death, and we used log binomial regression to estimate the association between Arabic mother tongue and stillbirth, adjusted for maternal characteristics. Stillbirth rates per 1000 births overall were lower among women with Arabic mother tongue (3.89) than among women with French or English mother tongue (4.52), and rates changed little over time. However, Arabic-speaking women from Arab countries had a higher adjusted risk of stillbirth than French- or English-speaking women (risk ratio = 1.23; 95% confidence interval, 1.07-1.42). Congenital anomalies, termination of pregnancy, and undetermined causes contributed to a disproportionate number of stillbirths among women with Arabic mother tongue compared with the French- and English-speaking majority. Arabic-speaking women from Arab countries have higher risks of stillbirth compared with the French and English majority in Quebec. Strategies to reduce stillbirth risk among Arabic speakers should focus on improving identification of causes of death.

Fasting during Ramadan Increases Risk of Very Preterm Birth among Arabic-Speaking Women

The impact of fasting on risk of preterm birth during Ramadan is unclear. We evaluated the association between Ramadan fasting during pregnancy and risk of preterm birth for Arab women in Canada. We analyzed birth certificates from 3,123,508 deliveries in Quebec, Canada, from 1981 to 2017. We identified 78,109 births of Arabic-speaking women and determined if Ramadan occurred during any trimester of pregnancy. We calculated rates of extreme (22-27 wk), very (28-31 wk), and late (32-36 wk) preterm birth and estimated RRs and 95% CIs for the association of Ramadan fasting with risk of preterm birth by pregnancy trimester, using log-binomial regression models adjusted for maternal characteristics. Arabic speakers had an overall preterm birth rate of 5.53 per 100 births, but rates varied with timing of Ramadan. Among Arabic speakers, fasting during Ramadan between weeks 15-21 of the second trimester was associated with 1.33 times the risk of very preterm birth relative to no fasting (95% CI: 1.06, 1.68). Between weeks 22 and 27 of the second trimester, fasting during Ramadan was associated with 1.53 times the risk of very preterm birth (95% CI: 1.21, 1.93). Ramadan fasting was not associated with extreme or late preterm birth regardless of the trimester of pregnancy. In this study of 78,109 births to Arabic-speaking women in Quebec, Ramadan fasting during the second pregnancy trimester was associated with the risk of very preterm birth. Optimal prenatal education about nutritional needs in the second trimester of pregnancy is recommended.

The burden of breast cancer in adult women with congenital heart disease

Breast cancer (BC) is the most common cancer among women in Quebec. Screening plays an important role in reducing its burden. BC incidence in adult women with congenital heart disease (ACHD) has not been studied. To compare ACHD women BC incidence rates to general population. To assess if ACHD women have comparable BC screening rates to non-ACHD women. The Quebec CHD database which includes 84,498 CHD patients was used to calculate the incidence rate of BC among ACHD women in 1992–2009. Age-specific and cumulative incidence of BC were calculated. The age-standardized incidence rate ratio (ASIR) was also calculated using direct standardization to compare rate to the general population and for 4 periods of time. Yearly BC screening participation rate was measured from 1989–2009, as the percentage of screen-eligible women, aged 50–69, who completed at least one mammogram within the 24 months. We compared it to the rate in Quebec general population. The incidence rate of BC progressively increased with advancing age with 21% of cases < 50 y, 45% in 50–69 y. In our cohort, 1 out of 10 women (9.8%; 95% CI, 8.6–11.0) developed BC over the course of adulthood. The ASIR was less < 1 before 2006 and 1.25 (95% CI, 1.23–1.26) in 2006–2009 indicating an increased risk of BC among ACHD women than general population in the recent era. Compared to the general population, ACHD women had lower yearly BC screening participation rates from 1989 (18.3% vs. 22.1%) to 2009 (64.6% vs. 67.9%) and still inferior to the official target participation rate (70%). The incidence of BC in ACHD women has increased and is now higher than the general population. Primary care physicians and cardiologists should collaborate to ensure appropriate cancer screening for ACHD women among whom attention to cancer screening may be overlooked. Further analyses will assess the impact of radiation from cardiac imaging and BC risk in this high exposed population.

Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers.

Genetic stratification approaches in personalized medicine may considerably improve our ability to predict breast cancer risk for women at higher risk of developing breast cancer. Notwithstanding these advantages, concerns have been raised about the use of the genetic information derived in these processes, outside of the research and medical health care settings, by third parties such as insurers. Indeed, insurance applicants are asked to consent to insurers accessing their medical information (implicitly including genetic) to verify or determine their insurability level, or eligibility to certain insurance products. This use of genetic information may result in the differential treatment of individuals based on their genetic information, which could lead to higher premium, exclusionary clauses or even the denial of coverage. This phenomenon has been commonly referred to as “Genetic Discrimination” (GD). In the Canadian context, where federal Bill S-201, An Act to prohibit and prevent genetic discrimination, has recently been enacted but may be subject to constitutional challenges, information about potential risks to insurability may raise issues in the clinical context. We conducted a survey with women in Quebec who have never been diagnosed with breast cancer to document their perspectives. We complemented the research with data from 14 semi-structured interviews with decision-makers in Quebec to discuss institutional issues raised by the use of genetic information by insurers. Our results provide findings on five main issues: (1) the reluctance to undergo genetic screening test due to insurability concerns, (2) insurers' interest in genetic information, (3) the duty to disclose genetic information to insurers, (4) the disclosure of potential impacts on insurability before genetic testing, and (5) the status of genetic information compared to other health data. Overall, both groups of participants (the women surveyed and the decision-makers interviewed) acknowledged having concerns about GD and reported a need for better communication tools discussing insurability risk. Our conclusions regarding concerns about GD and the need for better communication tools in the clinical setting may be transferable to the broader Canadian context.