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Background: Noninvasive prenatal testing (NIPT) provides important benefits yet raises ethical concerns. We surveyed Canadian pregnant women and their partners to explore their views regarding pressure to test and terminate a pregnancy, as well as other societal impacts that may result from the routinization of NIPT., Methods: A questionnaire was offered (March 2015 to July 2016) to pregnant women and their partners at five healthcare facilities in four Canadian provinces., Results: 882 pregnant women and 395 partners completed the survey. 64% of women anticipated feeling no pressure to take the test if it were offered routinely, and 39% were not concerned about routinization leading to increased pressure to terminate a pregnancy of a fetus with Down Syndrome. Regarding other social concerns possibly resulting from routinization, pregnant women were most concerned regarding a reduction in resources available for people with Down Syndrome and their families and least concerned regarding a decrease in the population of people with Down Syndrome., Conclusions: Our findings reflect the concerns expressed by pregnant women and their partners, both personal (pressure to test, pressure to terminate) and societal (e.g., regarding potential negative impact on people with disabilities and their families). Even if most women were not concerned about feeling pressured to test due to NIPT routinization, a large minority express concerns that should not be taken lightly. Moreover, a majority of respondents were concerned regarding pressure to terminate pregnancies due to NIPT routinization as well as regarding most societal impacts they were queried on, especially the possible future reduction in resources available for people with DS and their families. Canadian policy-makers should consider these potential negative ramifications of NIPT and ensure that appropriate social policies accompany its implementation.

Noninvasive prenatal testing (NIPT), based on the detection of cell-free fetal DNA in maternal blood, has transformed the landscape of prenatal care by offering clinical benefits (noninvasive, high specificity and sensitivity, early detection of abnormalities) compared to existing prenatal screening tests. NIPT has expanded rapidly and is currently commercially available in most of the world. As NIPT spreads globally, culturally sensitive and ethically sound implementation will require policies that take into consideration the social and cultural context of prenatal testing decisions. In a Western context, the main ethical argument for providing access and public funding of prenatal tests is the promotion of reproductive autonomy (also referred to as "procreative liberty" and "reproductive freedom"), by enabling pregnant women and couples to access information about the fetus in order to choose a certain course of action for pregnancy management (continuation of pregnancy and preparation for birth or termination). So how is the framework of reproductive autonomy operationalized in non-Western cultural contexts? We used Quebec, Canada, and Beirut, Lebanon, for case studies to explore what ethical considerations related to reproductive autonomy should guide the implementation of the test in various cultural contexts. To answer this question, we conducted a qualitative study to (1) explore the perceptions, values, and preferences of pregnant women and their partners about NIPT and (2) examine how these values and perceptions influence reproductive autonomy and decision making in relation to NIPT in these two different cultural settings, Lebanon and Quebec. Our findings may guide health care professionals in providing counseling and in helping women and their partners make better informed prenatal testing decisions. Further, at a policy level, such understanding might inform the development of local guidelines and policies that are appropriate to each context.

Background: Increasing cancer incidence and survivorship rates have made late-term effects, such as effects on fertility, a salient issue for adolescent cancer patients. While various barriers make it difficult for health care professionals to discuss oncofertility with adolescents and their parents, there are numerous reasons to hold such discussions, based on professional obligations and the ethical principles of respect for autonomy and beneficence. This systematic literature review presents and critically examines recommendations for adolescent oncofertility discussions., Methods: Conducted according to PRISMA guidelines, this systematic literature review includes English, French, and German articles published up until December 31, 2014. Articles were sought via a combination of search terms in four databases., Results: Eighty of 96 articles included in this review address recommendations for improving adolescent oncofertility discussions. These recommendations deal with how, when, what, and with whom professionals ought to have these discussions, as well as various systemic barriers and ways to address them., Conclusions: Based upon the principles of beneficence, respect for autonomy, and justice, we endorse several recommendations for oncofertility discussions with adolescents and their parents, including having a specific professional on the health care team initiate these discussions with all newly diagnosed patients; regularly doing so before, during, and after treatment; allowing adolescents to decide for themselves whom they wish to include in such discussions; employing various forms of communication; obtaining both adolescent assent and parental consent for fertility preservation (FP) procedures, especially at each stage (e.g., procurement and use); properly educating and training professionals to discuss oncofertility; promoting interdisciplinary collaboration; creating and implementing guidelines and policies; and ensuring equity of access to FP.