As new genomic information becomes available, is the clinic duty bound to inform patients who might be affected?

Healthcare providers are facing a host of new ethical and legal considerations, as genetic testing becomes more common. It is easy to marvel at the technical processes that enable genomic healthcare, but one should not forget the social aspect. There is one scenario in particular that requires attention.

Re-contacting patients who have previously undergone a genetic test, in light of new information.

There are a lot of issues that branch from this one scenario. Firstly, is there a professional duty to re-contact a patient? Letting a patient know that they may be at risk, will almost certainly have an impact on their life. The nature of heredity means that there will also be a familial impact.

As genomic research continues to bring to light new genetic links, to whom does the responsibility fall to keep up to date with literature? Is there a legal implication if the healthcare provider fails to notify a patient of any significant discoveries that may affect them?

This comes down to who owns and manages the individual’s genomic data. As genetic testing increases, there are several scenarios that need to be addressed. At present a detailed frame work to deal with the ethical and legal aspect of clinical genomics, does not exist.

Professor Susan Kelly, of Exeter University, is leading a new project looking into the implications of how NHS healthcare professionals re-contact patients. Specifically, the study will examine re-contacting current clinical practice in the NHS; the legal contexts and relevant guidelines; ethical issues; and expectations of patients and healthcare professionals.

Technological advances are leading the growth of genomic study and healthcare. But to make genomic healthcare a success, studies such as these are critical. It is easy to take for granted the education that many of us in and around the field have. But for many members of the public, the terms ‘genetic’ and ‘genomic’ are very poorly understood, and may have significant negative connotations. Despite the economic benefits of genetically modified crops, they have not been accepted by large segments of the population.

There is little doubt that increasing our understanding of complex diseases like cancer is a good thing. The more we can do to find reliable biomarkers, or predict aggravating factors, and choose the most effective course of treatment, the better. But we need to be prepared for how that integrates into the existing healthcare environment, as well as taking into account patient expectations and familial implications.

Professor Kelly’s 3 year project will extend the understanding of the implications of rapid innovation and mainstreaming of genomics for healthcare professional, patients and families, as well as contribute more broadly to understanding implementation processes in health care. The results of the project will help in developing an ethical and professional framework for the re-contacting of patients. For more details on the project, please visit http://socialsciences.exeter.ac.uk/sociology/research/projects/mainstreaminggenetics/