27.05.2013 - A survey of European clinical geneticists show that a vast majority reject direct-to-consumer (DTC) genetic testing without prior face-to-face counselling.
According to the survey, carried out by Heidi Carmen Howard from French INSERM and Pascal Borry from KU Leuven among 131 EU geneticists, DCT testing for monogenetic and complex diseases is more widespread than thought before. 44% of patients who asked their doctor for genetic counselling, had previously already undertaken a DCT test (Genome Medicine). However, the respondents seem concerned about the DCT test offers. 84% of them disagreed with replacing face-to-face supervision by a medical doctor with supervision via telephone, which is offered by some DTC testing firms. Over 85% of respondents said that they would offer genetic counselling to patients who asked for a consultation after having undergone DTC genetic testing
A majority of clinical geneticists also found it unacceptable to provide non-face-to-face medical supervision for: a pre-symptomatic test for a condition with very high penetrance; a predictive test for a condition that has a “medium” penetrance of 50 to 60%; and for carrier testing. For conditions that are neither treatable nor preventable and for disorders with serious health consequences, clinical geneticists were almost unanimous in expressing the unacceptability of offering such genetic tests outside of the traditional health care setting, without an established physician-patient relationship and without face-to-face medical supervision.
Recently, the German Ethics Council tabled recommendations on genetic diagnosis to the government asking for international rules for DCT testing and a duty to have face-to-face counselling before any of those tests. According to the survey, patients need qualified information on clinical significance, medical relevance and validity of such tests.
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