Re-contact in mainstreaming genetics V1
Research type
Research Study
Full title
Mainstreaming Genomics: Re-contacting patients in a dynamic healthcare environment (ESRC)
IRAS ID
153392
Contact name
Susan E. Kelly
Contact email
Sponsor organisation
University of Exeter
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
With the rapid technological advances in genetics, new information is becoming increasingly available (e.g. new information about natural history of a condition, improved diagnostic accuracy or new information about previously uncertain test results). Healthcare professionals will sometimes become aware that patients they have seen in the past might now benefit from more up to date information and may want to re-contact them. Re-contacting does not refer to routine follow-up appointments; rather, it refers to contacting patients who have previously been discharged from a genetic service.
This study investigates re-contacting in current clinical practice in the NHS; legal contexts and relevant guidelines; ethical issues; and expectations of patients and healthcare professionals.Re-contacting practices have evolved in the context of clinical genetic services. A considerable set of professional norms have developed within genetic services regarding handling genetic information, as such knowledge is understood to raise familial, future disease risk and uncertainty concerns. However, the picture is becoming ever more complex as genetic tests are increasingly ordered by medical specialties other than clinical genetics, such as oncology, cardiology and paediatrics, potentially leading to differences of professional norms and practices, as well as uncertainty regarding evolving, overlapping lines of responsibility.
Academic literature and clinical statements report a tension between the desirability - from professional and ethical points of view - and the logistical practicality of re-contacting patients and families. Logistical issues are also compounded by considerations of privacy, confidentiality and responsibility.
REC name
London - Chelsea Research Ethics Committee
REC reference
14/LO/2151
Date of REC Opinion
12 Dec 2014
REC opinion
Further Information Favourable Opinion