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? These important questions were examined in this research.
Recontacting in Mainstreaming Genetics
About the project
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. This ESRC funded three year project led by Prof Susan Kelly (SPA and Egenis) examined 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 investigated 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. This project contributed 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.
The outcomes of this project extended understanding of the implications of rapid innovation in and mainstreaming of genomics for healthcare professionals, patients and families, as well as contributing more broadly to understanding implementation processes in health care. The data and analysis provided 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. Importantly, the research from the project contributed to the recommendations of the European Society of Human Genetics on Recontacting, the first international guidelines in this area, which are shaping practice in this field globally.
D. Carrieri, H. Howard, C. Benjamin, A. Clarke, S. Dheensa, S. Doheny, N. L. Hawkins, T. Halbersma-Konings, L. Jackson, H. Kayserili, et al. “Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics.” 27 European Journal of Human Genetics (2019): 169–182.
N. L. Hawkins, T. Hughes-Davies. “Striking a balance: Resolving conflicts between the duty of confidentiality and duties to third parties in genetics.” 38 Legal Studies (2018): 645-665.
S. Doheney, A. Clarke, D. Carrieri, S. Dheensa, N. L. Hawkins, A. Lucassen, P. Turnpenny, and S. E. Kelly. “Dimensions of responsibility in medical genetics: exploring the complexity of the ‘duty to recontact.'” 37 New Genetics and Society (2018). DOI.
Recontacting patients when new genomic findings come to light, Policy Event, Wellcome Collection, London, June 2017. Policy Brief available here.