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33 Pre-Surgical Evaluation of Bilingual Epilepsy Patients; A Case Study Demonstrating the Importance of Bilingual Assessment
- Kirsty L Coulter, Ingrid Hastedt, Kathleen Feeney, Brandon Korman, Kayleen Ball
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- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, pp. 32-33
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Objective:
In the US, >20% of individuals aged 5 years and older speak a language other than English at home, with rates of bi- and multilingualism increasing. Providing linguistically- and culturally- competent care to increasingly diverse populations is a necessary task for neuropsychologists. The need for close attention to bilingualism is even more glaring in the context of neurosurgical interventions, such as in intractable epilepsy. Pre-surgical epilepsy evaluations serve as a baseline for post-surgical change, inform lateralization and localization, and help determine cognitive risks associated with surgery. The importance of evaluating bilingual status and assessing cognitive abilities in both languages, if needed, in presurgical epilepsy evaluations is examined. We present the neuropsychological profile of a 10-year-old bilingual male with intractable epilepsy participating in a pre-surgical epilepsy evaluation.
Participants and Methods:This right-handed male is a sequential language learner, exposed to Spanish at birth and English when he began kindergarten. His parent reported he was primarily English speaking. Developmental milestones were met within expected timeframes. Seizures began at age 5. He is prescribed Vimpat and Lamictal. vEEG during admission revealed right temporal-onset seizures. Neuropsychological assessment was conducted in English based on parent report; however, expressive language testing revealed significantly higher performance in Spanish (average) compared to English (exceptionally low). Subsequently, a bilingual provider was consulted, and supplemental Spanish verbal reasoning and verbal memory measures were administered.
Results:The patient’s neuropsychological profile captured a significant difference between English and Spanish verbal abilities. WISC-V Similarities scaled scores (ss) were 5 and 11 in English and Spanish, respectively. Vocabulary scaled scores were 8 and 15 in English and Spanish, respectively. Regarding verbal memory, list learning was below average in English (ss = 5), but low average in Spanish (ss = 6). Contextual verbal memory was only administered in Spanish; scores were average (ss = 10). Verbal Fluency administered in English was low (phonemic fluency ss = 5, categorical fluency ss = 6). fMRI verbal tasks were performed in English and revealed left-sided language lateralization.
Conclusions:In pre-surgical epilepsy evaluations of bilingual children, consideration of language is essential. Assessment of language dominance is a minimum requirement in bilingual families, followed by full bilingual evaluation if necessary. In this case, starkly different conclusions regarding lateralization and localization may have been made if the child had not been evaluated in both languages. In English, a significant split between verbal and non-verbal cognition was apparent, possibly suggesting involvement of the dominant left hemisphere. With Spanish testing, this split disappeared, with high average verbal skills. While a growing proportion of children in the US are bilingual, bilingual assessments are not commonly conducted in pre-surgical epilepsy evaluations. In fact, very little work has been done examining language functioning in bilingual epilepsy patients, particularly in children. With both epilepsy-and language-related factors at play in a developing brain, we encourage closer attention to these issues, particularly in the context of neurosurgical procedures.
Data protection for the common good: Developing a framework for a data protection-focused data commons
- Janis Wong, Tristan Henderson, Kirstie Ball
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- Journal:
- Data & Policy / Volume 4 / 2022
- Published online by Cambridge University Press:
- 17 January 2022, e3
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In our data-driven society, personal data affecting individuals as data subjects are increasingly being collected and processed by sizeable and international companies. While data protection laws and privacy technologies attempt to limit the impact of data breaches and privacy scandals, they rely on individuals having a detailed understanding of the available recourse, resulting in the responsibilization of data protection. Existing data stewardship frameworks incorporate data-protection-by-design principles but may not include data subjects in the data protection process itself, relying on supplementary legal doctrines to better enforce data protection regulations. To better protect individual autonomy over personal data, this paper proposes a data protection-focused data commons to encourage co-creation of data protection solutions and rebalance power between data subjects and data controllers. We conduct interviews with commons experts to identify the institutional barriers to creating a commons and challenges of incorporating data protection principles into a commons, encouraging participatory innovation in data governance. We find that working with stakeholders of different backgrounds can support a commons’ implementation by openly recognizing data protection limitations in laws, technologies, and policies when applied independently. We propose requirements for deploying a data protection-focused data commons by applying our findings and data protection principles such as purpose limitation and exercising data subject rights to the Institutional Analysis and Development (IAD) framework. Finally, we map the IAD framework into a commons checklist for policy-makers to accommodate co-creation and participation for all stakeholders, balancing the data protection of data subjects with opportunities for seeking value from personal data.