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Direct-to-consumer genetic testing: where and how does genetic counseling fit?
Wellcome, Connecting Sci, Soc & Eth Res Grp, Genome Campus, Cambridge, England..
Univ Porto, I3S, IBMC Inst Mol & Cell Biol, UnIGENe, Oporto, Portugal.;Univ Porto, I3S, IBMC Inst Mol & Cell Biol, Ctr Predict & Prevent Genet CGPP, Oporto, Portugal..
Univ Cent Lancashire, Sch Community Hlth & Midwifery, Preston, Lancs, England.;Liverpool Womens NHS Hosp Trust, Liverpool, Merseyside, England..
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2017 (English)In: Personalized Medicine, ISSN 1741-0541, E-ISSN 1744-828X, Vol. 14, no 3, p. 249-257Article in journal (Refereed) Published
Abstract [en]

Direct-to-consumer genetic testing for disease ranges from well-validated diagnostic and predictive tests to 'research' results conferring increased risks. While being targeted at public curious about their health, they are also marketed for use in reproductive decision-making or management of disease. By virtue of being 'direct-to-consumer' much of this testing bypasses traditional healthcare systems. We argue that direct-to-consumer genetic testing companies should make genetic counseling available, pre- as well as post-test. While we do not advocate that mandatory genetic counseling should gate-keep access to direct-to-consumer genetic testing, if the testing process has the potential to cause psychological distress, then companies have a responsibility to provide support and should not rely on traditional healthcare systems to pick up the pieces.

Place, publisher, year, edition, pages
FUTURE MEDICINE LTD , 2017. Vol. 14, no 3, p. 249-257
Keywords [en]
CHIP ME, connecting science, direct-to-consumer, DTCGT, genetic counseling, genetic test, genomics, website
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-325345DOI: 10.2217/pme-2017-0001ISI: 000401651400010OAI: oai:DiVA.org:uu-325345DiVA, id: diva2:1114197
Funder
Riksbankens Jubileumsfond, M13-0260:1Available from: 2017-06-22 Created: 2017-06-22 Last updated: 2017-06-22Bibliographically approved

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