Table 1 Illustrative quotes discussing family disclosure with the patient.
From: Disclosure of genetic information to family members: a systematic review of normative documents
Excerpt from document | Author | Year |
|---|---|---|
At a minimum, health-care professionals should be obliged to inform patients about the implications of their genetic test results and about the potential risks to their family members [13]. | American Society of Human Genetics | 1998 |
As a general rule, the possibility that relatives may have an interest in the information revealed by the test and the ways of dealing with disclosure are discussed with the individual to be tested in a pretest consultation [26]. | European Commission | 2004 |
[Initial counseling] sessions should be used as an opportunity for clinicians to articulate the circumstances under which they would consider disclosure obligatory, thus allowing patients to seek care elsewhere if they found the conditions for testing unacceptable [27]. | American College of Obstetricians and Gynecologists | 2008 |
Effective communication from the first consultation may help the patient to fully understand the implications of the genetic information being discussed and avoid a situation where he or she refuses consent to disclose genetic information to genetic relatives [24]. | Australian National Health and Medical Research Council | 2014 |
[I]ndividuals might reasonably be invited to request their relatives to seek genetic counseling [19]. | World Health Organization | 2010 |
If genetic testing reveals clinically significant mutations with heritable potential, patients should be strongly encouraged to share the results with affected or at-risk family members [29]. | American College of Obstetricians and Gynecologists | 2017 |
Patients with a positive test result should be urged to notify at-risk relatives who may benefit from genetic testing [22]. | American National Society of Genetic Counselors | 2011 |
[W]here the application of such standards might result in grave damage to the interests of other family members, then the health professionals should seek to persuade the individual, if persuasion should be necessary, to allow the disclosure of the genetic information [12]. | Nuffield Council on Bioethics | 1993 |
With genetic conditions, an ethical responsibility can also be seen to extend to the wider family so that every effort is made to encourage sharing of information with relatives at risk [24]. | Australian National Health and Medical Research Council | 2014 |
Geneticists who press for the information to be relayed or who themselves relay the information violate patient autonomy [32]. | German Society of Human Genetics | 1996 |
