About the project

Is there a professional duty or responsibility to recontact patients for whom providers hold genetic or genomic information? Do patients and health care providers share responsibility for being aware of new developments relevant to the patient’s genome? Do different health care specialties now ordering genetic tests share understandings regarding managing genetic information, which in clinical genetics services is understood to have familial as well as individual implications?

Genomics and genetic tests are increasingly being ordered by medical specialties outside of clinical genetics, such as cardiology, oncology and paediatrics, potentially requiring negotiation of norms and practices with regard to storing and communicating information to patients and their families. We hypothesize that mainstreaming genomics in healthcare should be understood as a social rather than a merely technological process, and that professional subcultures across specialties will vary with regard to norms and expectations concerning recontacting patients. This project will contribute significantly to understanding normative, practice and ethical concerns across medical specialties regarding the holding and communication of genetic information to patients (and possibly family members) accounting for innovation over time.

This ESRC funded three year project led by Prof Susan Kelly (SPA and Egenis) will examine re-contacting in current clinical practice in the NHS; legal contexts and relevant guidelines; ethical issues; and expectations of patients and healthcare professionals. The study will investigate the hypothesis that mainstreaming genomics in healthcare should be understood as a social as well as a technological process, and that professional subcultures across specialties will vary with regard to norms and expectations concerning recontacting patients. It will evaluate the applicability of a model of technological innovation within health systems developed by sociologist Carl May (Normalisation Process Theory), although it may result in development of an alternative approach. 

The outcomes of this project will extend understanding of the implications of rapid innovation in and mainstreaming of genomics for healthcare professionals, patients and families, as well as contribute more broadly to understanding implementation processes in health care. The data and analysis generated will provide robust evidence to inform the development of an ethical and professional framework on recontacting patients as genomic technologies are increasingly integrated across areas of medical care.

 

Specific Objectives

1. Explore and analyse the ethical and legal issues relating to a potential obligation to recontact

2. Survey current clinical practices regarding recontacting, in light of new genetic information, within and between different medical specialties in the NHS

3. Investigate patients’ expectations of genomic information management and expectations regarding responsibilities and mechanisms for recontacting

4. Investigate healthcare professional perspectives and expectations concerning recontacting in different medical specialties

5. Engage with stakeholders (healthcare professionals, patients groups, and relevant organizations such as BSGM) to integrate the above findings and analyses in the drafting of recontacting professional guidance or to work toward a professional framework as appropriate