An ethical dilemma in communicating genetic information in families: respect for autonomy and privacy in conflict with beneficence and nonmaleficence.

Research output: Unpublished contribution to conferenceOther


In the future genetic information will be more numerous and easily accessible. Genetic information has a dual character: it’s as well personal, individual as familial information. The latter assumes a moral duty of the individual proband, from whose blood the information was collected, to inform her/his relatives about the genetic risk circulating in the family. So, the autonomy of the relatives is likewise respected: they can decide for themselves if they want or don’t want to know their individual genetic risk.

This paper focus on the rare case where the proband doesn’t want to inform her/his relatives about the genetic risk in the family and forbids his doctor-genetic counselor to do so. Can a doctor/genetic counselor renounce her/his duty to keeping medical information confidential and inform the relatives about their potential risks? The doctor/genetic counselor is caught in an ethical dilemma between on the one hand respecting the autonomy of his proband and her/his informational privacy and on the other hand acting beneficent towards the relatives or prevent them from harm.

In Belgium there are 8 centers for human genetics who consider ‘appropriate psychological and social support’ as core competences (Skirton, 2010). Their social support accentuates the involvement of family members. They will always try to convince the proband to communicate the genetic information to relatives.

A doctor/genetic counselor is by the Belgian ‘Law on Patients’ Rights’ (2002) restrained to the duty of confidentiality. In the rare case where the proband is adamand in her/his refusal, a doctor/genetic counselor can appeal to ‘a conflict of interests’. This ‘force majeure’ is a juridical concept from criminal law that allows doctors to break their duty of confidentiality in exceptional circumstances.

Is this policy in Belgium, considering the increasing amount of genetic information, still adequate?

To analyse this specific ethical dilemma, we investigate the standpoints in the international scientific literature. We systematically searched electronic databases and bioethical books from 1999 until 2016.

We divide the standpoints in three different positions:

(1) Although the family holds an important place in the counseling proces, respect for the autonomy and privacy of the individual proband/patient prevails. In the final decision, the interests of relatives are recognized so far as one can prove that a particular relative is at risk for serious harm.

(2) The interests of the relatives are extensively taken into account and are recognized. Formal procedures are invoked by a refusal of the proband to communicate risk information with relatives. Nevertheless the final decision is up to the proband.

(3) Genetic information is by nature familial so there should be no restraints for blood relatives to know. The family is the ‘unit of care’. Acting beneficent and preventing relatives from harm by overriding the probands’ right to confidentiality, starts from the assumption that relatives want ‘to know’.

We prefer the first standpoint for Belgium, even when more genetic information in different branches of medicine will be available. The centers for Human Genetics dispose of psychosocial expertise and are family-oriented in their counseling. We advocate that when genetic information is used in other disciplines of medicine that, apart from the genetic know-how, also the psychosocial skills to ease communication in families will be taken in as well.

Original languageEnglish
Number of pages2
Publication statusPublished - 7 Sep 2017
Event2017 EACME Annual Conference: "Justice in Health Care - Values in Conflict" - Institut Borja de Bioètica, Barcelona, Spain
Duration: 7 Sep 20179 Sep 2017


Conference2017 EACME Annual Conference


  • ethics, genetic information, families


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