Background: As newborn screening (NBS) expands to meet a broader definition of benefit, the scope of parental consent warrants reconsideration. Methods: We conducted a mixed methods study of health care provider attitudes toward consent for NBS, including a survey (n = 1,615) and semi-structured interviews (n = 36). Results: Consent practices and attitudes varied by provider but the majority supported mandatory screening (63.4%) and only 36.6% supported some form of parental discretion. Few health care providers (18.6%) supported seeking explicit consent for screening condition-by-condition, but a larger minority (39.6%) supported seeking consent for the disclosure of incidentally generated sickle cell carrier results. Qualitative findings illuminate these preferences: respondents who favored consent emphasized its ease while dissenters saw consent as highly complex. Conclusion: Few providers supported explicit consent for NBS. Further, those who supported consent viewed it as a simple process. Arguably, these attitudes reflect the public health emergency NBS once was, rather than the public health service it has become. The complexity of NBS panels may have to be aligned with providers’ capacity to implement screening appropriately, or providers will need sufficient resources to engage in a more nuanced approach to consent for expanded NBS.
Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. Methods: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding result management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42).
The expansion of newborn screening (NBS) is increasing the generation of incidental results, notably carrier results. Although carrier status is generally understood to be clinically benign, concerns persist that parents may misunderstand its meaning, with deleterious effects on children and their families. Expansion of the NBS panel in Ontario, Canada in 2006 to include sickle cell disorders drew attention to the policy challenge of incidental carrier results. We conducted a study of consumer and provider attitudes to inform policy on disclosure. In this paper, we report the results of (i) qualitative interviews with health-care providers, advocates and parents of carrier infants and (ii) focus groups with new parents and individuals active with the sickle cell community. Lay and provider participants generally believed that carrier results were clinically insignificant. However, some uncertainty persisted among lay consumers in the form of conjecture or doubt. In addition, consumers and advocates who were most informed about the disease articulated insistent yet dissonant claims of clinical significance. Meanwhile, providers referenced research knowledge to offer an equivocal assessment of the possibility and significance of clinically symptomatic carrier status. We conclude that many interpretations of carrier status are in circulation, failing to fit neatly into the categories of 'clinically significant' or 'benign.' This creates challenges for communicating clearly with parents -challenges exacerbated by inconsistent messages from screening programs regarding the significance of sickle cell carrier status. Disclosure policy related to incidentally generated infant carrier results needs to account for these complex realities.
Abortion is a common and safe procedure in Canada, with the Canadian Institute for Health Information reporting approximately 100,000 procedures per year. Yet access remains problematic. As abortion is unrestricted by criminal law in Canada, access is limited by geographic barriers and by a shortage of providers. We present a feminist critical lens to describe how the marginalization of nursing and nurses in abortion care contributes to social stigma and public misunderstanding about abortion access. The roles of registered nurses and nurse practitioners in abortion advocacy, service navigation, counselling, education, support, physiological care and follow up are underutilized and under-researched. In 2015, decades after its availability elsewhere in the world, Health Canada approved mifepristone (a pill for medical abortion). In 2017, provincial regulators began to authorize nurse practitioners to independently provide medical abortion care, as appropriate given the inclusion in nurse practitioner scope of practice to order diagnostic tests, make diagnoses, and treat health conditions. Ensuring nurse practitioners are able to practice medical abortion has the potential to significantly increase abortion access for rural, remote and other marginalized populations. There is also an opportunity to optimize the registered nurse role in abortion care. However, achieving these improvements is challenging as abortion is not routinely taught in Canadian Schools of Nursing. We argue that to destigmatize abortion and improve access, undergraduate nursing and nurse practitioner programs across the country must begin to include abortion and family planning competencies.
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