Genetics and the interpersonal elaboration of ethics

The Ethox Centre, University of Oxford, Institute of Health Sciences, UK.
Theoretical Medicine and Bioethics (Impact Factor: 0.78). 10/2001; 22(5):451-9. DOI: 10.1023/A:1013062902531
Source: PubMed

ABSTRACT Confidentiality in genetic testing poses important ethical challenges to the current primacy of respect for autonomy and patient choice in health care. It also presents a challenge to approaches to decision-making emphasising the ethical importance of the consequences of health care decisions. In this paper a case is described in which respect for confidentiality calls both for disclosure and non-disclosure, and in which respect for patient autonomy and the demand to avoid causing harm each appear to call both for testing without consent, and testing only with consent. This creates problems not only for clinicians, families and patients, but also for those who propose clinical bioethics as a tool for the resolution of such dilemmas. In this paper I propose some practical ways in which ethical issues in clinical genetics and elsewhere, might be addressed. In particular I call for a closer relationship between ethics and communication in health care decision-making and describe an approach to the ethics consultation that places particular emphasis on the value of interpersonal deliberation in the search for moral understanding. I reach these conclusions through an analysis of the concept of 'moral development' in which I argue that the achievement of moral understanding is a necessarily intersubjective project elaborated by moral persons.

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    • "If an IF occurs that could affect family members, the healthcare professional or researcher is faced with a number of ethical dilemmas. Parker [2001] suggests that undertaking a genetic test that could have repercussions for other family members could be interpreted as tantamount to carrying out a test on those individuals without their consent [Parker, 2001]. The confidentiality of that affected individual has also been compromised by revealing their shared genetic information. "
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    ABSTRACT: Incidental findings arise when clinically relevant genetic information about a research participant or patient is identified outside the scope of the original research objective or diagnostic test being performed. These findings can relate to carrier status for a heritable condition, misattributed paternity or increased susceptibility to a medical condition. The decision whether to disclose these findings to the research subject or patient is underpinned by many ethical, moral, and potentially legal considerations. There is an urgent need for definitive guidelines for researchers and healthcare professionals. We performed a systematic review of the relevant literature concerning the disclosure of incidental findings, based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses recommendations, using the prescribed flowchart and checklist. At initial screening, 473 articles were retrieved. The inclusion and exclusion criteria aimed at obtaining data that were relevant and of sufficient quality were applied and a total of four relevant studies were identified, comprising 2,680 individual participants and 1,023 guidance documents. Major themes emerging from the included articles include patient autonomy, patient welfare, harmful secrets, and genetic literacy. The lack of relevant studies emphasizes the urgent need for empirical investigations into the disclosure or non-disclosure of genetic incidental findings, and the provision of guidelines to assist healthcare professionals and researchers. © 2012 Wiley Periodicals, Inc.
    American Journal of Medical Genetics Part A 12/2012; 158A(12). DOI:10.1002/ajmg.a.35615 · 2.16 Impact Factor
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    ABSTRACT: Rights, autonomy, privacy, and confidentiality are concepts commonly used in discussions concerning genetic information. When these concepts are thought of as denoting absolute norms and values which cannot be overriden by other considerations, conflicts among them naturally occur. In this paper, these and related notions are examined in terms of the duties and obligations medical professionals and their clients can have regarding genetic knowledge. It is suggested that while the prevailing idea of autonomy is unhelpful in the analysis of these duties, and the ensuing rights, an alternative reading of personal self-determination can provide a firmer basis for ethical guidelines and policies in this field.
    Theoretical Medicine and Bioethics 10/2001; 22(5):403-14. DOI:10.1023/A:1013097617552 · 0.78 Impact Factor
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    ABSTRACT: When misattributed paternity is discovered in the course of genetic testing, a genetic counselor is presented with a dilemma concerning whether to reveal this information to the clients. She is committed to treating the clients equally and enabling informed decision making, but disclosing the information may carry consequences for the woman that the counselor cannot judge in advance. A frequent suggestion aimed at avoiding this problem is to include the risk of discovering nonpaternity in the informed consent process for counseling. In this paper I argue that such a move does not resolve the problem, because the conflict hinges on the interpretation of equality on which the counselor operates. Given the principles of genetic counseling, neither construal of equality yields a satisfactory solution to the conflict. In fact, I conclude that including nonpaternity in informed consent is not endorsed by either view, and we are still left with the question of what to do should nonpaternity be discovered. I suggest a compromise position concerning disclosure, involving revealing relevant genetic information but withholding nonpaternity when possible.
    Bioethics 02/2007; 21(1):41-50. DOI:10.1111/j.1467-8519.2007.00522.x · 1.48 Impact Factor
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