[HTML][HTML] 'We're kind of like genetic nomads': Parents' experiences of biographical disruption and uncertainty following in/conclusive results from newborn cystic fibrosis …

F Boardman, C Clark - Social Science & Medicine, 2022 - Elsevier
As whole genome sequencing is being considered as a tool to deliver expanded newborn
screening (NBS) globally, the range of equivocal results it could produce are gaining …

Fluctuating salience in those living with genetic risk of motor neuron disease: A qualitative interview study

J Howard, F Mazanderani, KF Keenan… - Health …, 2024 - Wiley Online Library
Background Motor neuron disease (MND)(also known as amyotrophic lateral sclerosis) is a
life‐limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic …

Health in data space: Formative and experiential dimensions of cross-border health data sharing

K Hoeyer, S Green, A Martani, A Middleton… - Big Data & …, 2024 - journals.sagepub.com
Healthcare is increasingly datafied, and a wide range of actors—patients, clinicians,
administrators, policymakers, and industry lobbyists—want to be able to exchange and …

[图书][B] Cancer Entangled: Anticipation, Acceleration, and the Danish State

SH Nielsen, M Frumer, SMH Offersen, CH Merrild… - 2023 - books.google.com
Cancer Entangled explores the shifts that took place in Denmark around the millennium,
when health promoters set out to minimize delays in cancer diagnoses in hope of improving …

Testing Care and Morality: Everyday Testing During COVID-19 in Denmark

C Nørholm, J Seeberg, A Roepstorff… - Medical …, 2024 - Taylor & Francis
ABSTRACT COVID-testing was central to control the spread of infection in Denmark.
Drawing on ethnographic fieldwork, we show that testing was not just a diagnostic sign; it …

Lived experiences of undergoing regular tumor screening in patients with multiple endocrine neoplasia types 1 and 2 (MEN1/MEN2)

MJ Klein Haneveld, GD Valk… - Journal of genetic …, 2024 - Wiley Online Library
Targeted screening programs for individuals with an increased risk for cancer have become
increasingly available. Patients with multiple endocrine neoplasia (MEN), rare genetic …

Relational chronicities: kinship, care, and ethics of responsibility

E Zabiliūtė, H McNeilly - Anthropology & Medicine, 2023 - Taylor & Francis
Care for chronic illness in clinical and everyday settings is relational and underpinned by
ethical dilemmas about kinship care responsibilities as much as it is about self-care …

7•“KEEPING AN EYE ON IT”

M FRUMER - … : Anticipation, Acceleration, and the Danish State, 2023 - books.google.com
As medical historian David Cantor (2007) has argued, aspirations of controlling cancer in
the twentieth century have come to embrace a medicalized notion of prevention that …

Precision Medicine, Future Risk and the Present Self

LM Hoffman - Anthropology Today, 2024 - Wiley Online Library
In May 2015, my mother was diagnosed with stage IV pancreatic cancer and passed away
three months later at the age of 78. Two years later, my older brother, only 53 at the time …

3•“WHAT IF IT IS JUST HIDING?”

C Seeking - Cancer Entangled: Anticipation, Acceleration, and the …, 2023 - degruyter.com
Cancer in itself is not incurable. It becomes incurable from the simple fact that its unfortunate
victims harbour and nurse their cancers till it is too late. It is not the disease which is …