Who’s responsible for informing relatives about genetic risk?

By Kalle Grill and Anna Rosén.

It is established practice in many countries that healthcare professionals encourage patients to share relevant risk information with genetic relatives. We mostly endorse this practice but question a normative assumption that typically underpins it.

Both practitioners and academics in the field are in general agreement that:

  • It is desirable that people are informed about increased risk of disease due to a genetic predisposition when there are medically warranted surveillance programs or preventive treatments available.
  • Individual patients who have such information about their relatives have a moral duty to provide it to them.
  • Healthcare professionals normally have no duty to inform relatives exposed to genetic risks.

These normative assumptions typically lead to the conclusion that healthcare professionals should do their best to encourage and support their patients in fulfilling the patients’ moral duty to inform relatives. Reforms and projects in the area typically aim to improve healthcare professionals’ ability to support patients, by e.g. motivational conversations or written information leaflets.

We question assumption 3. We believe that health care professionals have a duty to inform individuals about increased inherited risk of disease if relevant prevention is available. This duty is not absolute and it needs to be specified, but the first and important step is to recognize its very existence. Ultimately, this duty is derived from society’s duty to promote and protect public health (i.e. each individual’s health). Because genetic information of patients is held locally, the duty to inform naturally falls on individual clinics, rather than e.g. public health agencies. If a health care system is set up such that individual doctors should care exclusively about their own patients, then other health care professionals must be given the task to reach out to the non-patients that are known to exist and to potentially benefit from being offered information pertinent to their health (i.e. their patients’ at-risk relatives).

We recognize that there are duties that may conflict with the duty to inform, most obviously respect for patient confidentiality. We also recognize that resources within health care are limited and so priorities must be set. For example, efforts to identify and locate relatives may be cumbersome and should therefore not always be attempted. However, in many cases both patient consent and contact details of genetic relatives can be easily gathered by a simple conversation with the patient. Patients are obviously important allies in the fulfilment of the duty to inform, one way or other. That does not mean, however, that the duties of society and of healthcare professionals can be deflected onto patients.

What is relevant for healthcare professionals is their own responsibility and their own duties. The relationship to patients must be managed respectfully and constructively. This relationship should not include pressuring patients to inform their at-risk relatives, just as it should not include pressuring them to behave morally in other ways.

Paper title: Healthcare professionals’ responsibility for informing relatives at risk of hereditary disease

Authors: Kalle Grill1 & Anna Rosén2


1 Historical, Philosophical and Religious Studies, Umeå University, Sweden.

2. Radiation SciencesUmeå UniversitySweden.

Competing interests: None declared.

Social media accounts of post author: @kallegrill and @RosenAnnaSweden


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