Compensating for Stigma: Representations of Hard to Adopt Children in the "Today’s Child"

We examine 4,300 advertisements of children who were featured in Today’s Child, a daily newspaper column written by Helen Allen in the Toronto Telegram and Toronto Star (1964–1982) and syndicated across North America. We highlight how stigma and values were attributed to adoptive children featured in these advertisements. Our findings reveal how the advertisements perpetuated and attached stigma to these children and how this stigma had to be compensated for the children to appeal to prospective parents. Compensatory strategies were ultimately required to manage stigma and increase the value of the featured children.

Genetic counseling as preventive intervention: toward individual specification of transgenerational autism risk

Background Although autism spectrum disorders (ASD) are among the most heritable of all neuropsychiatric syndromes, most affected children are born to unaffected parents. Recently, we reported an average increase of 3–5% over general population risk of ASD among offspring of adults who have first-degree relatives with ASD in a large epidemiologic family sample. A next essential step is to investigate whether there are measurable characteristics of individual parents placing them at higher or lower recurrence risk, as this information could allow more personalized genetic counseling. Methods We assembled what is to our knowledge the largest collection of data on the ability of four measurable characteristics of unaffected prospective parents to specify risk for autism among their offspring: (1) sub clinical autistic trait burden, (2) parental history of a sibling with ASD, (3) transmitted autosomal molecular genetic abnormalities, and (4) parental age. Leveraging phenotypic and genetic data in curated family cohorts, we evaluate the respective associations between these factors and child outcome when autism is present in the family in the parental generation. Results All four characteristics were associated with elevation in offspring risk; however, the magnitude of their predictive power—with the exception of isolated rare inherited pathogenic variants —does not yet reach a threshold that would typically be considered actionable for reproductive decision-making. Conclusions Individual specification of risk to offspring of adults in ASD-affected families is not straightforwardly improved by ascertainment of parental phenotype, and it is not yet clear whether genomic screening of prospective parents in families affected by idiopathic ASD is warranted as a clinical standard. Systematic screening of affected family members for heritable pathogenic variants, including rare sex-linked mutations, will identify a subset of families with substantially elevated transmission risk. Polygenic risk scores are only weakly predictive at this time but steadily improving and ultimately may enable more robust prediction either singly or when combined with the risk variables examined in this study.

Preconception expanded carrier screening: a focus group study with relatives of mucopolysaccharidosis type III patients and the general population

Preconception expanded carrier screening (ECS) enables prospective parents to assess their risk of having a child with an autosomal recessive disorder. Knowledge on motivations, feelings, and considerations people have towards the offer and use of ECS is limited. To enrich the public and professional discussion on ECS implementation, this study explored the perspectives towards various aspects of ECS in seven focus groups compromising first- and second-degree relatives of MPS III patients (N=9, N=4, N=5, N=5) and members of the general Dutch population (N=6, N=7, N=5). The focus groups were audio recorded and the transcripts were qualitatively analyzed to identify themes. Both relatives of MPS III patients and participants from the general population supported offering ECS, in particular for severe, childhood-onset disorders. Important barriers identified for ECS were a lack of genetic knowledge and a perceived lack of personal relevance and awareness, as well as out-of-pocket costs of testing. The majority of participants would prefer full disclosure of individual test results instead of couple-based test results. Moreover, offering people a choice for the way of reporting was proposed. All participants agreed that more efforts, for example by governmental campaigns, should be made to increase awareness on the availability, potentials, and limitations of ECS. Educating prospective parents about ECS is essential for increasing awareness and informed decision making. This study provides valuable insights that can be used by governments and public health authorities when considering implementation of preconception ECS.

Unexpected

Unexpected is a feminist meditation on parenthood and disability in an age of genomics. It examines a rich array of cultural narratives about parenting disabled children, particularly those with Down syndrome: published memoirs and excerpts from Alison Piepmeier’s interviews with parents and prospective parents, as well as the pronouncements and implied narratives of bioethicists, cultural critics, and disability advocates. The book splices Piepmeier’s scholarly work with life writing about the experience of being a single parent to a daughter with Down syndrome and her own disabling illness.