ASHG Statement on Direct-to-Consumer Genetic Testing in the United States

- American Journal of Human Genetics
Author/s: -Hudson, Kathy -Javitt, Gail -Burke, Wylie -Byers, Peter
Journal: American Journal of Human Genetics
Year: 2007
Volume: 81
Issue: 3
Pages: 635
Start Page: 635

Direct-to-consumer (DTC) genetic testing has been gaining prominence over the past several years.1 Proponents of DTC testing cite benefits that include increased consumer access to testing, greater consumer autonomy and empowerment, and enhanced privacy of the information obtained. Critics of DTC genetic testing have pointed to the risks that consumers will choose testing without adequate context or counseling, will receive tests from laboratories of dubious quality, and will be misled by unproven claims of benefit.
Currently, DTC genetic testing is permitted in about half the states2 and is subject to little oversight at the federal level. In July 2006, the Government Accountability Office issued a report documenting troubling marketing practices by some DTC testing companies,3 and the Federal Trade Commission (FTC) issued a consumer alert cautioning consumers to be skeptical about claims made by some DTC companies.4 Internationally, several countries have issued reports cautioning against its use,5–7 and several European countries have banned or are considering banning it entirely.