4 - Tracing genealogies of non-disclosure

Summary

Dilemmas of truth telling in conventional bioethics

Despite the declared ideals of ‘non-directive’ genetic counselling, testees with a detected predisposition may often find themselves encouraged by practitioners to believe it would be best to inform direct ‘blood’ relatives they too may face a shared risk of developing future illness. This purported ‘obligation’ to disclose genetic information to other family members is, however, more presumed an ethical virtue than an indigenously formulated kinship duty people themselves are moved to articulate (see Suter 1993; Zimmerli 1990; Higgs 1998; Jackson 2001). Moreover it is one underscored institutionally by converging debates in mainstream biomedical ethics on the social responsibility or otherwise of the clinician to commit so-called ‘unsolicited disclosure’. This latter principle evolves out of a particular rationale of decision-making that seeks to identify those circumstances in which it may be presumed right to disclose information that is genetically relevant to a relative (for example, siblings and cousins) without the prior consent from the original testee. In this sense, unsolicited disclosure to a third party sets up moral dilemmas that quite obviously divide persons. On the one hand there is the assumption of the testee's right to privacy, and on the other the competing interests and assumed right of untested kin, as prospective recipients of genetic information, not to be told. The absolutist view that there are no instances justifying breaches of medical confidentiality appears to be mitigated by the more widely supported stance, endorsed in the UK by the General Medical Council, that exceptions may be permissible in cases where somebody else will be protected from serious harm.