THE SOCIAL CONSEQUENCES OF NEW TECHNOLOGIES IN BRAIN TUMOURS
Research type
Research Study
Full title
Treatment in a new era of molecular and personalised medicine: Understanding and anticipating the social consequences for people affected by brain tumours
IRAS ID
269692
Contact name
Delasi Apraku
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
UCL Data Protection Registration, Z6364106/2019/10/89
Duration of Study in the UK
2 years, 5 months, 30 days
Research summary
BACKGROUND
Described as a “new era” in neuro-oncology, molecular diagnosis and personalised treatments have inspired patients, families, and clinicians with new hopes. However, these approaches also provoke major dilemmas around individual and population-wide treatment decisions, equity of treatment access, and the broader social arrangements of care.This 36-month multi-sited ethnographic research project will be among the first empirical studies on the social consequences of molecular diagnosis and personalised medicine in oncology and the first in neuro-oncology. It will examine the hopes, aspirations, apprehensions, doubts and values of early generations of patients, families, clinicians, scientists, advocates and policymakers who are pioneering a way into this new era of diagnosis and treatment.
AIM
We aim to 1) examine the social consequences of new medical technologies in brain tumours, and 2) support patients, families and clinicians to anticipate and navigate the new dilemmas they pose.METHOD
This multi-sited ethnographic research project will be based mainly in three centres in the United Kingdom and employ qualitative methods of document analysis, semi-structured interviews and systematic observations. At each centre, we will interview diverse groups of patients, family carers, healthcare professionals. We will also interview other key stakeholders and experts who will be recruited through our professional networks. Consistent with an ethnographic approach, we will observe routine care in settings including clinical consultations, multidisciplinary team meetings, diagnostic laboratories, and scientific meetings.The primary analytic product will be an in-depth, comparative account of medical innovation and its social consequences, which is grounded in data.
REC name
London - South East Research Ethics Committee
REC reference
20/LO/0032
Date of REC Opinion
21 Feb 2020
REC opinion
Further Information Favourable Opinion