Leadership, Literacy, and Translational Expertise in Genomics: Challenges and Opportunities for Social Work

Werner‐Lin, Allison; McCoyd, Judith L. M.; Doyle, Maya; Gehlert, Sarah

doi:10.1093/hsw/hlw022

Cited by 14 publications

(4 citation statements)

References 31 publications

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“…Counseling aimed at helping parents to gain a sense of control in the face of uncertainty may lead to enhanced coping and adaptation [Madeo et al, ]. With a growing cadre of genetics‐informed mental health providers [Werner‐Lin et al, ] pairing assessment of parental distress/anxiety with genetics‐focused support may help to rebalance expectations about the child's development.…”

Section: Discussionmentioning

confidence: 99%

“They Can't Find Anything Wrong with Him, Yet”: Mothers’ experiences of parenting an infant with a prenatally diagnosed copy number variant (CNV)

Werner‐Lin

Walser

Barg

2016

American J of Med Genetics Pt A

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Chromosome microarray (CMA) testing is used widely in prenatal settings. Some copy number variants (CNVs) detected using CMA are associated with variable or uncertain phenotype and/or possible neurocognitive involvement. Little is known about parenting an infant following such findings. Researchers conducted interviews with 23 mothers of infants diagnosed prenatally with a potentially pathogenic CNV to elicit perspectives on the child's development and disclosure of results to others. Interviews were audiotaped and analyzed for common themes. Most respondents reported their infants were developing typically. The majority expressed concern about their child's future development given the CNV. They reassured themselves their child was unaffected by: comparing him/her to siblings, scrutinizing the child's appearance and behavior, or following provider reassurances. Even without developmental and neurological concerns, some remained acutely observant of their child's neurocognitive development, leading to enrollment in early intervention or ongoing medical assessments. Mothers who were unconcerned stated they would likely attribute atypical behavior or developmental to the CNV. All interviewees shared the result with pediatricians, relatives, or friends, and many shared across groups. Most shared information with pregnant friends considering prenatal testing, but withheld partial or full information from family members due to stigma, lack of understanding, inability to explain the CNV, or presumptions that the child was unaffected. Research must address the long-term consequences of returning uncertain results for parent-child bonding and costs of ongoing assessment and early intervention for typically developing children. Follow up appointments will permit providers to screen for anxiety and assuage worry in the absence of symptoms. © 2016 Wiley Periodicals, Inc.

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Section: Discussionmentioning

confidence: 99%

“They Can't Find Anything Wrong with Him, Yet”: Mothers’ experiences of parenting an infant with a prenatally diagnosed copy number variant (CNV)

Werner‐Lin

Walser

Barg

2016

American J of Med Genetics Pt A

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“…As Kenney and Müller (2017: 23) have illustrated, this research has formed part of a web of studies, within which everyday ‘assumptions about sex, gender, sexuality, and class are present in the design, interpretation, and dissemination of experiments on the epigenetic effects of maternal care’. Drawing on work in environmental epigenetics, some have called for members of their professional groups to become conversant with the insights from epigenetics; social work, for instance (see Werner-Lin et al., 2016). However, the extent to which claims from such areas of research are beginning to find their way into public health advisories has been raised as a concern by a range of biomedical scientists, social scientists, and ethicists (Juengst et al., 2014; Mansfield, 2012; Müller et al., 2017).…”

Section: Environment Adversity and Carementioning

confidence: 99%

Epigenetics, education, and the plastic body: Changing concepts and new engagements

Pickersgill

2019

Research in Education

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Epigenetic processes, and the investigative practices that take these as their focus, are of increasing interest to a range of professionals beyond biomedicine. This has been piqued by, especially, the belief that bioscientific research is demonstrating new molecular mechanisms through which the social and physical environment impact upon the bodies of humans and other animals. Beyond the laboratory, epigenetic notions are entangled with wider ideas about the malleability of the soma (e.g., relating to neuroscience). In many contexts (including, to an extent, education), this intertwinement has contributed to producing and valourising a conception of a particularly plastic body. In this paper, I draw on a range of biomedical and education-related texts in order to outline and reflect upon the notions of ‘education’ and ‘epigenetics’ that are supported through and propelled by an array of writings that, to greater or lesser extents, bring these spheres of praxis into conversation. Discussions of epigenetics and stress, for instance, are framing certain kinds of educational work (e.g., with new parents) as a means of intervening in soma and society. In so doing, they implicitly extend ideas about what education is and what it can do. On the other hand, writings from educational researchers, for example, are enrolling epigenetic findings and ideas to support various positions or approaches. Many education researchers will be sceptical of some of the more hyperbolic assertations made about the significance of epigenetics. However, the fact that a nascent discourse connecting education and epigenetics is emerging is suggestive of a need for reciprocal, thoughtful, and critical exchange with bioscientists who seek to address educational issues, or whose work is being enrolled by others to do so.

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“…Health professionals in general and community health workers in particular, among them social workers [ 16 , 17 ] and nurses [ 18 ], play a pivotal role in health education and health promotion providing relevant information and increasing public awareness on prevention issues [ 19 ]. They can intervene in fear management, test’s result distress, treatment of previous traumatic prevention experiences or support in practical matters such as a referral to specialized test centers or scheduling an appointment [ 18 , 20 , 21 ].…”

Section: Introductionmentioning

confidence: 99%

Knowledge and Use of Cervical Cancer Prevention Services among Social Work and Nursing University Students

et al. 2022

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The present study examines: (a) the knowledge of healthcare students on cervical cancer (CC) issues and the use of related preventive services, as well as their association with the field of study and other sociodemographic characteristics; (b) the possible effect of social capital and its parameters. A cross-sectional study was conducted, using a convenience non-probability sampling technique. The final sample consisted of forty-nine social work and fifty-one nursing students. The two groups were similar regarding their sociodemographic characteristics and the knowledge and use of gynecological preventive services. However, the nursing students undertook a PAP smear check-up to a lesser extent (48.6%) compared to social work students (51.4%) (p = 0.026). The social capital scores were high for both groups, but social work students were significantly more ‘Tolerant to diversity’. For the total sample, only the ‘Family and friends connections’ subscale correlated with knowledge about the existing gynecological preventive services. Among the main reasons explaining university students’ avoidance of preventive testing were the feelings of fear and embarrassment associated with the PAP smear test. Given the significance of the future professional roles of healthcare students as information sources and leaders in women’s CC preventive behavior, understanding the individual factors contributing to their own adherence is essential. It is equally important to increase their scientific knowledge through the improvement of academic curricula regarding these issues.

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Leadership, Literacy, and Translational Expertise in Genomics: Challenges and Opportunities for Social Work

Cited by 14 publications

References 31 publications

“They Can't Find Anything Wrong with Him, Yet”: Mothers’ experiences of parenting an infant with a prenatally diagnosed copy number variant (CNV)

“They Can't Find Anything Wrong with Him, Yet”: Mothers’ experiences of parenting an infant with a prenatally diagnosed copy number variant (CNV)

Epigenetics, education, and the plastic body: Changing concepts and new engagements

Knowledge and Use of Cervical Cancer Prevention Services among Social Work and Nursing University Students

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