Adam Gristwood,
Communications Officer

Tuesday, 29 January 2013, 18:00-19:00 in room 208

The personal genome: assessing scientists' perceptions

Adam Gristwood in OIPA will briefly present a study that he made as a part of his Science Studies Master's thesis, followed by discussion

Although there have been many studies focussing on the public’s views of genetics research, far less has been done to investigate and analyse scientists’ views on such issues. This is despite often-emotive contributions from scientists on related issues in the media, scientific press and at academic conferences. In this study I interviewed 11 experts working in genetics or closely related fields in the UK and Germany about what they think about issues such as privacy, legislation and outreach in relation to total genome sequencing. Using these data to inform a critical literature review, my study highlights that:

  • Scientists are largely positive that significant health benefits will arise from technologies. However progress will most likely be gradual rather than fast-paced as a result of challenges such as technical advances, clinical translation, interpretations of risk, and ethical issues.

  • Some scientists are concerned that legislation protecting the privacy of genomic information could undermine research efforts. However there is a strong recognition of the need to reach a compromise that satisfies scientists and society. Issues such as informed consent and incidental findings are presenting particularly difficult legal and ethical challenges.

  • Many believe that scientists ought to be involved in public outreach activities for reasons such as duty and self-protection. However some feel poorly equipped by resources, motivation or time. Nevertheless, there is a strong sense that effective engagement with the public is both necessary and achievable.

My study concludes with 10 recommendations that could assist in supporting a better transition to more effective and efficient healthcare.