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Expectations and Controversy in the Making of Markets in Direct-to-Consumer (DTC) Personal Genomics

Introduction

Researcher Name: Chris Groves, Adam Hedgecoe, Richard Tutton (Cesagen)

Affiliated Staff: Paul Martin (University of Nottingham)

Duration: 01.08.2009- 30.09.2012

Background

The DTC genetic testing industry promised to transform the relationship between patients and doctors, public knowledge about genomics, and the conduct of medical research by empowering people with information about their future genetic risks and permitting them to set a new consumer-led research agenda.  However, the personal genomics market is also a highly controversial one that has been subject to much debate: scientists, clinicians and ethicists question the scientific validity and reliability of personal genomics services, criticize the direct-to-consumer approach for excluding professional counselling and support, and warn of the danger of users being either unnecessarily worried by results or being misled by fraudulent claims


Aims of Project

Using work in Science and Technology Studies (STS) on markets and on the role of expectations in innovation, this project investigates the promise and controversy around the establishment of the commercial DTC personal genomics market as a case study of how markets are being realized and organized today in personalized medicine. It will examine the expectations of industrial actors and opposition of regulators and how these are shaping this market in a hostile financial, regulatory, and scientific environment.

Specifically, we are focusing on the following elements:

  1. A historical account of the growth of DTC genetic testing and the regulatory and policy responses to this market in the US and Europe.
  2. An exploration of discourses of responsible innovation in the personal genomics industry in the wake of challenges to its legitimacy by regulators in the US and Europe.
  3. A mapping of the European DTC genetic testing industry.

Research Methods

At the moment the project is principally using documentary analysis of various public sources but also anticipate conducting interviews with relevant actors in the near future.

Key Findings

In August 2010, we completed a survey of the DTC genetic testing industry. This was undertaken by Jacob Halford who worked as an intern in the Cesagen Summer Internship Scheme, which gives opportunities to undergraduate students to gain experience of academic research. The report on this survey can be downloaded here - DTC Genetic Testing Report.

Publications

Tutton, R. and Prainsack, B. (2011) ‘Altruistic or Enterprising Selves? Making up Research Subjects in Genetic Research’, Sociology of Health and Illness. 33: pp 1-15

R Tutton and A Hedgecoe (2011) ‘A Response to Christopher Hood’s ‘The ethics of personal genetic profiling’, Genetics, Society and Policy 6 (1): pp 66-68