No Consensus Worldwide

The family covenant proposed by Doukas and Berg (2001) is a welcome idea, for several reasons. The issue of disclosure to family is one of the most ethically troubling in clinical genetics, as evidenced by my two international surveys (in 1985 and 1995) of geneticists’ ethical views. Results from those studies showed that geneticists in 36 nations found family disclosures the second most difacult issue they dealt with in clinical practice (after disorders to abort), and there was no consensus among them about how to handle these issues. In the 1995 survey, of the 2,906 genetics professionals questioned (including 1,084 in the United States), 53% who were U.S.-based and 34% who were based in other countries would respect the conadentiality of a patient with Huntington’s disease (HD) who did not want to reveal the diagnosis to blood relatives. Thirty-two percent who were U.S.-based and 37% who were based internationally would tell relatives if they asked. Finally, 6% of those based in the United States and 12% based elsewhere would tell relatives even if they didn’t ask. The remaining 12% would send the matter back to the referring physician, on grounds that he or she knows the family better (Wertz and Fletcher n.d.). A similar split in responses appeared for questions about other disorders, such as hemophilia, familial hypercholesterolemia, and cancer syndromes. There was a slight but not statistically signiacant increase in the number of genetics professionals (60% in the United States) who would preserve the conadentiality of a person diagnosed with schizophrenia. Although there is an apparent trend toward preserving conadentiality (and away from telling relatives unasked) since the 1985 survey, there are still only eight nations where even a small majority would preserve conadentiality. Australia was the highest at 60%. In our cultural neighbors, Canada and the United Kingdom, 50% and 39% would preserve conadentiality. These agures tend to shock bioethicists who take conadentiality as the norm. It is time to acknowledge that genetics is a family affair and to seek solutions that serve the needs of all parties (Wertz and Fletcher n.d.). In most of the world (except English-speaking nations and northern Europe) the unit of privacy is the family, not the individual. Many respondents from Latin America, Southern Europe, Eastern Europe, the Near East, and Asia checked both “I would preserve the patient’s conadentiality” and “I would tell relatives if they ask” and then proceeded to explain that these answers were not contradictory, because they were only overriding conadentiality if they told relatives who didn’t ask or told employers or insurers. Furthermore, patients may hold very different views than those of medical professionals and bioethicists. Over half (53%) of 476 American genetics patients surveyed thought spouses should have automatic access to DNA in a medical record, without the individual’s consent, and almost half (44%) thought blood relatives should have automatic access. Seventy-ave percent thought the physician should override conadentiality to disclose a diagnosis of relevance to the relatives, such as HD. It should be noted, however, that most patients in the survey were white working-class women. Other groups, including minority groups, might view these questions differently. Any family covenant must take culture into account and must realize that many cultures place less emphasis on individual conadentiality than do professionals (Wertz and Fletcher n.d.). Geneticists sometimes overemphasize the value of pieces of genetic information and the use that people will actually make of that information. The President’s Commission (1983), the Institute of Medicine (1994), and the American Society of Human Genetics (1998) (none of which are referenced in Doukas and Berg’s article) all emphasized that overriding conadentiality would be justiaable only in extremely rare circumstances: for example, where all efforts to persuade the individual to disclose voluntarily have failed, where there was a high risk of serious harm, and where the information would likely be used to prevent harm. Using these recommendations as guidelines, Doukas and Berg’s Case 1 is the only case of the three they present where a sound argument might be made for overriding conadentiality. In Case 2 the woman knows testing is available and is emphatic that she doesn’t want it; her wishes not to know her daughter’s diagnosis should be respected. In Case 3 (presumably this is carrier testing, not disease testing), the disorder in question is recessive, and the likelihood that both brother and wife have the mutation is small and does not justify overriding conadentiality. However, if the same doctor or HMO is caring for the whole family, the doctor or HMO could recommend independent carrier testing for the brother, probably on the same basis (ethnicity, family history) that the index patient underwent carrier testing. I am equally, perhaps more, concerned that overenthusiastic physicians will jump to disclose to relatives and spouses every piece of genetic information (much of it