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  1. Communicating Genetic Information in the Family: The Familial Relationship as the Forgotten Factor.R. Gilbar - 2007 - Journal of Medical Ethics 33 (7):390-393.
    Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious harm or death to (...)
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  • Is It Ethical to Deny Genetic Research Participants Individualised Results?P. Affleck - 2009 - Journal of Medical Ethics 35 (4):209-213.
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  • Building on Relationships of Trust in Biobank Research.M. G. Hansson - 2005 - Journal of Medical Ethics 31 (7):415-418.
    Trust among current and future patients is essential for the success of biobank research. The submission of an informed consent is an act of trust by a patient or a research subject, but a strict application of the rule of informed consent may not be sensitive to the multiplicity of patient interests at stake, and could thus be detrimental to trust. According to a recently proposed law on “genetic integrity” in Sweden, third parties will be prohibited from requesting or seeking (...)
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  • The Right Not to Know: An Autonomy Based Approach.R. Andorno - 2004 - Journal of Medical Ethics 30 (5):435-439.
    The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...)
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  • Commentary.G. Laurie - 2004 - Journal of Medical Ethics 30 (5):439-440.
    Dr Andorno and I have corresponded for some time on the question of a right not to know information. I enjoyed reading his paper and I am struck by the degree of agreement that we share. We both agree—for example, that unsolicited knowledge can be a burden which can significantly compromise an individual’s psychological integrity. We both share a desire to respect individual self determination. Also we each consider it reasonable for individuals to choose not to receive potentially harmful information. (...)
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  • Disclosure 'Downunder': Misadventures in Australian Genetic Privacy Law.B. Arnold & W. Bonython - 2014 - Journal of Medical Ethics 40 (3):168-172.
    Along with many jurisdictions, Australia is struggling with the unique issues raised by genetic information in the context of privacy laws and medical ethics. Although the consequences of disclosure of most private information are generally confined to individuals, disclosure of genetic information has far-reaching consequences, with a credible argument that genetic relatives have a right to know about potential medical conditions. In 2006, the Privacy Act was amended to permit disclosure of an individual's genetic information, without their consent, to genetic (...)
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