Unambiguous test results or individual independence? The role of clients and families in predictive BRCA-testing in the Netherlands compared to the USA

It has been frequently acknowledged that results of predictive genetic tests may have implications for relatives as well as for the individual client. Ethicists have noted that an individual's right to know her genetic risk may conflict with a relative's right not to know this risk. It is hardly recognised, however, that family members may have a role in the production of test results as well. This article reconstructs the actual process of predictive BRCA-testing in the Netherlands, with a special focus on the roles assigned to clients and families and the expectations about family relationships inscribed in this practice. Fieldwork was carried out in an outpatient clinic for clinical genetics in an academic hospital. Data collection included 11 interviews with members of families, observations of counselling interviews between research participants and their clinical geneticist, and interviews with the 2 clinical geneticists involved in the consultations. It compares this process to the American practice of BRCA-testing. Whereas Dutch practice presupposes active involvement of diseased relatives in the testing process, American practice constitutes the client primarily as an independent individual who may or may not decide to involve her relatives. Moreover, Dutch clients are expected to have a harmonious, open and communicative relationship with their relatives. The American client, in contrast, is supposed to have more distant family relationships. It is argued that an interpretation of these differences in terms of 'the right to know' and 'the right not to know' misses the point, because the production of informative test results depends on the cooperation of relatives. The differences between Dutch and American practice are more adequately interpreted as implying a preference for unambiguous test results versus a preference for individual independence. The paper shows what is lost when opting for one value at the cost of another and discusses several alternatives to circumvent the value conflict at stake. By opening up for discussion the values implicit in BRCA-testing practices, the paper aims to contribute to debates on the overall desirability of these practices.