Blurring lines The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects
Companies that offer direct‐to‐consumer genetic testing and conduct research are blurring the line between customers and research subjects. Should these companies adhere to the same ethical regulations as academic researchers?
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| Published in | EMBO reports Vol. 11; no. 8; pp. 579 - 582 |
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| Main Authors | , , |
| Format | Journal Article |
| Language | English |
| Published |
London
Nature Publishing Group UK
01.08.2010
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| Subjects | |
| Online Access | Get full text |
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| Abstract | Companies that offer direct‐to‐consumer genetic testing and conduct research are blurring the line between customers and research subjects. Should these companies adhere to the same ethical regulations as academic researchers? |
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| AbstractList | Companies that offer direct‐to‐consumer genetic testing and conduct research are blurring the line between customers and research subjects. Should these companies adhere to the same ethical regulations as academic researchers? |
| Author | Howard, Heidi C Knoppers, Bartha Maria Borry, Pascal |
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| Cites_doi | 10.1126/science.1095019 10.1080/15265160802478404 10.1371/journal.pgen.1000167 10.1126/science.1125339 10.1002/1096-8628(20010201)98:4<336::AID-AJMG1100>3.0.CO;2-7 10.1136/jcp.2003.9886 10.1371/journal.pgen.1000665 10.1146/annurev.genom.9.081307.164319 |
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| SubjectTerms | EMBO47 EMBO49 Genetic Privacy Genetic Testing - economics Genetic Testing - ethics Humans Marketing Outlook Research - economics Research Subjects |
| Subtitle | The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects |
| Title | Blurring lines |
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