[PDF][PDF] Promissory accounts of personalisation in the commercialisation of genomic knowledge

M Arribas-Ayllon, S Sarangi… - Communication & medicine, 2011 - researchgate.net
As part of personalised medicine emerging from the human genomics revolution, many
websites now offer direct-to-consumer genetic testing. Here, we examine three personal …

Between responsibility and desire: Accounts of reproductive decisions from those at risk for or affected by late‐onset neurological diseases

Á Mendes, J Sequeiros… - Journal of Genetic …, 2021 - Wiley Online Library
This paper explores ways in which genetic risk foregrounds forms of responsibility while
dealing with reproduction. We analyzed individual and family semi‐structured interviews (n …

How do women talk about self‐funded breast cancer genetic testing?: Small stories and stance‐taking strategies

A Bechaz, A Sexton, G Gill… - Journal of Genetic …, 2023 - Wiley Online Library
Genetic testing for breast cancer genes is an experience which is inextricably linked with
health communication practices and the broader social context in which it occurs. Linguistic …

Stigma, self-esteem and reproduction: talking with men about life with hypohidrotic ectodermal dysplasia

A Clarke - Sociology, 2013 - journals.sagepub.com
Interviews were conducted with members of 20 families, including affected males, to explore
their experiences of life with hypohidrotic ectodermal dysplasia (HED), which impacts …

Coming to terms with the imperfectly normal child: attitudes of Israeli parents of screen-positive infants regarding subsequent prenatal diagnosis

AE Raz, Y Amano, S Timmermans - Journal of community genetics, 2019 - Springer
This study examines the interface between newborn screening and prenatal diagnosis from
the point-of-view of parents of screen-positive children. Many conditions covered by …

“It just becomes much more complicated”: Genetic counselors' views on genetics and prenatal testing

S Markens - New Genetics and Society, 2013 - Taylor & Francis
Many social scientists and commentators have expressed concerns about the acceleration
of genetic medicine and testing in the last few decades. While there is a growing body of …

“Is this something you want?”: genetic counselors' accounts of their role in prenatal decision making

S Markens - Sociological Forum, 2013 - Wiley Online Library
With the widespread availability of prenatal genetic diagnosis, bioethical concerns have
emerged about why women make use of these technologies, and the potential eugenic …

Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease

Á Mendes, M Paneque, A Clarke… - European Journal of …, 2019 - nature.com
This paper reports accounts from people at-risk for, or affected by, Machado-Joseph
disease, and their family members, about their decisions not to seek pre-symptomatic …

Negotiating blame and responsibility in the context of a “de novo” mutation

R Dimond - New Genetics and Society, 2014 - Taylor & Francis
This article examines the implications for parents and family members when a child is
diagnosed with a genetic syndrome. In particular, it describes how practices of …

Genetic counseling in multicultural and multilingual contexts

O Zayts, A Pilnick - The Routledge handbook of language and …, 2014 - api.taylorfrancis.com
In recent years there has been a proliferation of research in medical sociology, medical
anthropology, and medical education examining the role of culture in genetic counseling …