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June 2016

Do It Yourself Newborn Screening

Author Affiliations
  • 1Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Kapucijnenvoer, Leuven, Belgium
  • 2Centre of Genomics and Policy, Department of Human Genetics, McGill University, Montreal, Quebec, Canada
JAMA Pediatr. 2016;170(6):523-524. doi:10.1001/jamapediatrics.2016.0166

Direct-to-consumer (DTC) genetic testing on the Internet is flourishing and now includes disease risk testing that complements health care. Direct-to-consumer genetic testing continues to raise concerns, notably about consent and counseling issues, in addition to the clinical validity and utility of the tests. Direct-to-consumer genetic testing in children adds specific issues.1 Clinical guidelines currently advocate that testing and screening minors is only recommended when established, effective, and important medical treatment can be offered or when testing provides scope for treatment that may prevent, defer, or alleviate the outbreak of disease or its consequences. This reflects the careful consideration that is usually given to genetic tests, for which special attention is paid to communication about the test and its results, the confidentiality of genetic information, the willingness of the client to make the request, and the psychosocial impact of the test results. Recently, a new form of DTC genetic tests for children has emerged that raises additional ethical issues: a supplemental newborn screening (NBS) test sold to expecting couples. Although a few companies already sell such tests, the Baby Genes service is novel in several respects (https://www.babygenes.net).

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